Undiagnosed, numbness, tingling, Muscle weakness and more

Posted by jair19 @jair19, Nov 4, 2019

I am 46 and I have something going on with my body and can’t get answers. Maybe someone here has something similar or has some idea of where I could turn next. Last December I woke up with numbness and tingling on my right side (arms and legs). 2 weeks later, it was on my left side too, and sometimes my face. I had an MRI, which showed lesions in my brain, but not my C or S spine. I had a spinal tap (specifically for MS panel) and it was clear. I had 2 EMG tests, both normal. I have had tons of bloodwork done, ruled out many autoimmune diseases, viruses/ infections, toxins, etc. My bloodwork is all normal. I saw an MS specialist who ran a 2nd MRI on brain and C spine, all the same (this was 6 months after the first), nothing lit up. No lesions in spine. So they ruled out MS. They thought maybe Amyloidosis, then ruled that out. I was tested for small fiber neuropathy, which was then ruled out. The numbness, tingling etc has never gone away – at all. It sometimes also includes burning, electric jolts, cold sensations, tightness in the muscles (that is pretty constant now), constant weakness in muscles (going up stairs fatigues my legs quickly when it never used to), I have trouble lifting my left leg – my muscles won’t let me. After a 1.5 mile hike up to a cave, my legs were shaking and in pain the rest of the day and I was in a lot of pain at night – legs on fire. I can’t overdo it, but I also have to move my body or I hurt more, so I walk almost daily. This summer I lost my appetite, felt sick to my stomach a lot, had bowel issues, and lost 18-20 pounds in about 10 weeks without trying. Then that tapered off. A couple of months ago I started having bladder issues where I had to go frequently -sometimes 4-6 times in an hour, each time feeling urgent, and something coming out each time I went. I have had some light headedness and get off balance sometimes. I had a tilt table test and a gastric emptying test, both normal. While I am glad that my body is so “normal” with all of these tests, it leaves me with no answers and I feel like I have hit a dead end. There is something going on, but nobody can figure it out. I have been to 3 neurologists plus a neuro/ pain management dr. I am not in constant pain, but I am in constant discomfort with the neuropathy in my legs especially. And they ache all the time, like sore muscles from a big workout. The next step is another EMG in December, but I am sure it will also be normal. I am frustrated and feel like I can’t do anything because I don’t know what is the cause of the problems. Any advice, ideas of what to look at, try next, etc would be appreciated.

@jair19 Your doctors might not be thinking about physical issues such as tight fascia and muscles that create pressure on nerves and cause problems because it alters alignment of bone, muscle and joints. Some of those spaces where nerves pass are very small, and your muscle movement might be restricted. The fascia is a cob web net that holds all your organs, and it can cause irritation because of extra pressure from tight tissue, and if you have had an injury or surgery, that adds to the tightness and can cause scar tissue in the fascia. This is something I work on myself. I am a spine surgery patient, and I have thoracic outlet syndrome which is often missed and misdiagnosed. I've had Doppler image tests that show restricted blood with a change of arm position from TOS. TOS causes compression of nerves and blood vessels to my arms, and tightness through one side of my body from my neck and through my chest and hips. It's all connected and can pull my pelvis out of alignment. When that happens, my legs fatigue easily and I can have sciatic and low back pain on one side. I have also had sciatic pain and all over body pain that was caused by cervical spinal cord compression. I have experienced the burning nerve pain and electric bolts. The left sided tightness from TOS was also enough to rotate my C1 through C4 vertebrae and cause dizziness which was happening before my spine surgery. I am 3 years post op, and I can still have some cervical rotation if I overdo it and cause a muscle spasm, but everything calmed down after the spine problem was fixed. I know how to relieve the fascial tightness with stretches and I have been working with a physical therapist for a few years and doing a lot of myofascial release. This gets everything back in alignment and loosens up the pressure. Abnormal cervical rotation can change blood flow to the brain and cause dizziness and vertigo. When I get one side too tight between my neck and jaw, it causes fascial tinging by affecting the Trigeminal nerve. TOS causes the tightness between my neck and jaw. It has been enough to cause me to wear out dental fillings on that side of my mouth, and cause pain in my jaw and teeth from misalignment that is corrected with physical therapy. My therapist has taught me where to press to ease that tension. A good doctor who understands TOS is hard to find because it isn't covered in depth in medical school. Look for a specialist at a university or teaching hospital that treats TOS such as Mayo. Correct posture is important. Unfortunately, many of us have a forward head and shoulder position with a slouching posture and that can cause TOS as well as physical build or repetitive stress injuries or injuries such as a whiplash. Look on medical center websites for listings of conditions they treat to begin your search.

You also mentioned rapid weight loss without trying. That could be an overactive thyroid. I have had weight loss when my thyroid function changed, and then the prescription thyroid hormones I was taking became an overdose and I felt lousy. The overdose on thyroid hormones caused symptoms of anxiety, and rapid heart rate for me. I take desiccated pig thyroid which is identical to human hormones. In my experience, a functional medicine doctor has been the best at managing my thyroid. Thyroid function is complex, and what is considered normal on a blood test is just an average of the general population many of whom also have thyroid issues that are common, and not what is best for the body. If your doctor is going by the recommendation listed on blood test results, it may not be right for the patient, according to my functional medicine doctor.

The sore muscles your describe could be fascial pain. That is what you feel if you work out too hard or overstretch something. It is great that you can hike and it sounds like you are in good shape except for the tightness in your body. My suggestion would be to have an evaluation with a physical therapist who does the John Barnes methods of myofascial release. MFR therapy helps a lot of things and the therapist can feel the tight pathways through your body. Here are some links to the MFR discussion we have on Connect where I have collected a lot of information on MFR. There is a provider finder on the MFR website. Another good website to explore is Training and Rehabilitation. That is authored by a physical therapist for PT's and has detailed explanations of the issues. He doesn't focus on MFR, but he does explain alignment issues. You might also ask your doctors if you have any instability in your spine that could change spinal alignment in different positions. MRI's of a spine laying down might be different than standing or sitting and a physical therapist would need to know about that. That certainly could change things in ways the doctors may now be thinking about if your spine is not held in correct alignment by core strength.

Alignment can be corrected with MFR because it allows things to move back where they belong. It is a gentle stretching therapy, and there may be many layers to work through so patience with recovery is important and progress can be gradual. Core strength has helped me rehab and I started riding my horse at 7 months post spine surgery with good posture, and just walking did wonders for my strength. Without a horse, you could simulate that by sitting on a large therapy ball. I do have a bulging lumbar disc that clicks when it is rotated, and that can be enough to stop sciatic pain if it's rotated back in place. I'm sure my pelvis alignment is part of that too because putting it back in place with exercise and MFR stops any pain that I had in my legs, and building the core strength prevents it from happening.

Here are the links.

Myofascial Release therapy https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Myofascial Release therapy John Barnes methods websitehttps://myofascialrelease.com/

Jaw misalignment https://trainingandrehabilitation.com/true-cause-solution-temporomandibular-dysfunction-tmd/

Vestibular impairment and TMJ https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/

Thoracic Outlet Syndrome https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Thoracic Outlet Syndrome https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

Cervical spine instability at C1 & C2 https://trainingandrehabilitation.com/atlas-joint-instability-causes-consequences-solutions/

Fixing shoulder pain with scapular stability https://trainingandrehabilitation.com/shoulder-pain-scapular-stability/

Lumbar plexus Compression https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

Physical Causes of hip pain https://trainingandrehabilitation.com/causes-hip-pain-how-to-fix/

REPLY
@jenniferhunter

@jair19 Your doctors might not be thinking about physical issues such as tight fascia and muscles that create pressure on nerves and cause problems because it alters alignment of bone, muscle and joints. Some of those spaces where nerves pass are very small, and your muscle movement might be restricted. The fascia is a cob web net that holds all your organs, and it can cause irritation because of extra pressure from tight tissue, and if you have had an injury or surgery, that adds to the tightness and can cause scar tissue in the fascia. This is something I work on myself. I am a spine surgery patient, and I have thoracic outlet syndrome which is often missed and misdiagnosed. I've had Doppler image tests that show restricted blood with a change of arm position from TOS. TOS causes compression of nerves and blood vessels to my arms, and tightness through one side of my body from my neck and through my chest and hips. It's all connected and can pull my pelvis out of alignment. When that happens, my legs fatigue easily and I can have sciatic and low back pain on one side. I have also had sciatic pain and all over body pain that was caused by cervical spinal cord compression. I have experienced the burning nerve pain and electric bolts. The left sided tightness from TOS was also enough to rotate my C1 through C4 vertebrae and cause dizziness which was happening before my spine surgery. I am 3 years post op, and I can still have some cervical rotation if I overdo it and cause a muscle spasm, but everything calmed down after the spine problem was fixed. I know how to relieve the fascial tightness with stretches and I have been working with a physical therapist for a few years and doing a lot of myofascial release. This gets everything back in alignment and loosens up the pressure. Abnormal cervical rotation can change blood flow to the brain and cause dizziness and vertigo. When I get one side too tight between my neck and jaw, it causes fascial tinging by affecting the Trigeminal nerve. TOS causes the tightness between my neck and jaw. It has been enough to cause me to wear out dental fillings on that side of my mouth, and cause pain in my jaw and teeth from misalignment that is corrected with physical therapy. My therapist has taught me where to press to ease that tension. A good doctor who understands TOS is hard to find because it isn't covered in depth in medical school. Look for a specialist at a university or teaching hospital that treats TOS such as Mayo. Correct posture is important. Unfortunately, many of us have a forward head and shoulder position with a slouching posture and that can cause TOS as well as physical build or repetitive stress injuries or injuries such as a whiplash. Look on medical center websites for listings of conditions they treat to begin your search.

You also mentioned rapid weight loss without trying. That could be an overactive thyroid. I have had weight loss when my thyroid function changed, and then the prescription thyroid hormones I was taking became an overdose and I felt lousy. The overdose on thyroid hormones caused symptoms of anxiety, and rapid heart rate for me. I take desiccated pig thyroid which is identical to human hormones. In my experience, a functional medicine doctor has been the best at managing my thyroid. Thyroid function is complex, and what is considered normal on a blood test is just an average of the general population many of whom also have thyroid issues that are common, and not what is best for the body. If your doctor is going by the recommendation listed on blood test results, it may not be right for the patient, according to my functional medicine doctor.

The sore muscles your describe could be fascial pain. That is what you feel if you work out too hard or overstretch something. It is great that you can hike and it sounds like you are in good shape except for the tightness in your body. My suggestion would be to have an evaluation with a physical therapist who does the John Barnes methods of myofascial release. MFR therapy helps a lot of things and the therapist can feel the tight pathways through your body. Here are some links to the MFR discussion we have on Connect where I have collected a lot of information on MFR. There is a provider finder on the MFR website. Another good website to explore is Training and Rehabilitation. That is authored by a physical therapist for PT's and has detailed explanations of the issues. He doesn't focus on MFR, but he does explain alignment issues. You might also ask your doctors if you have any instability in your spine that could change spinal alignment in different positions. MRI's of a spine laying down might be different than standing or sitting and a physical therapist would need to know about that. That certainly could change things in ways the doctors may now be thinking about if your spine is not held in correct alignment by core strength.

Alignment can be corrected with MFR because it allows things to move back where they belong. It is a gentle stretching therapy, and there may be many layers to work through so patience with recovery is important and progress can be gradual. Core strength has helped me rehab and I started riding my horse at 7 months post spine surgery with good posture, and just walking did wonders for my strength. Without a horse, you could simulate that by sitting on a large therapy ball. I do have a bulging lumbar disc that clicks when it is rotated, and that can be enough to stop sciatic pain if it's rotated back in place. I'm sure my pelvis alignment is part of that too because putting it back in place with exercise and MFR stops any pain that I had in my legs, and building the core strength prevents it from happening.

Here are the links.

Myofascial Release therapy https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Myofascial Release therapy John Barnes methods websitehttps://myofascialrelease.com/

Jaw misalignment https://trainingandrehabilitation.com/true-cause-solution-temporomandibular-dysfunction-tmd/

Vestibular impairment and TMJ https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/

Thoracic Outlet Syndrome https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Thoracic Outlet Syndrome https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

Cervical spine instability at C1 & C2 https://trainingandrehabilitation.com/atlas-joint-instability-causes-consequences-solutions/

Fixing shoulder pain with scapular stability https://trainingandrehabilitation.com/shoulder-pain-scapular-stability/

Lumbar plexus Compression https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

Physical Causes of hip pain https://trainingandrehabilitation.com/causes-hip-pain-how-to-fix/

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Wow – that is a lot of information! Thank you! I will look into those things. Thank you for all the links. I know they have tested my thyroid (in my blood) over several years, and the numbers are always around the same range, so right now they aren’t any different from my normal, but I could ask my doctor about different screenings.

Liked by Jennifer Hunter

REPLY
@jair19

Wow – that is a lot of information! Thank you! I will look into those things. Thank you for all the links. I know they have tested my thyroid (in my blood) over several years, and the numbers are always around the same range, so right now they aren’t any different from my normal, but I could ask my doctor about different screenings.

Jump to this post

@jair19 You are welcome. Thank you for your kind words. Hopefully, there is a solution in something there for you. My doctor tests for T3 and T4 and reverse T3 for thyroid. That gives a better picture of what the thyroid is doing or not doing. You will need to advocate for yourself and get other opinions if your doctors are not finding answers for you. Not all doctors are familiar with MFR, I don't know if you need a script to see a physical therapist. In some states, patients can get an evaluation from a PT without a script, and then require a script to have insurance accept treatment for payments for the therapy. Call the therapist that you are considering working with and ask questions about insurance coverage and about what kind of treatment they can do for your conditions. My therapist is an expert level in John Barnes methods. If you don't find someone in your area, you can call Therapy on the Rocks in Sedona, AZ and ask for names of therapists who have trained there. http://therapyontherocks.net/ If you do start with MFR therapy, I hope you'll share your progress in the Connect MFR discussion. I have learned a lot from my physical therapist as you can probably tell by the information that I've shared. Good luck!

Liked by jair19

REPLY

Have you ruled out CIDP? A lot of your issues are simiiiar to mine and I have CIDP

REPLY
@tjp4

Have you ruled out CIDP? A lot of your issues are simiiiar to mine and I have CIDP

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@tjp4 That is actually one of the ones that isn’t ruled out (or maybe not even tested yet) that I have wondered about. The one thing that I am not sure about is that I thought CIDP has irregular EMG results. My results were always “normal” but they were within the first few months of this starting. My Dr will do another EMG next month, so maybe that will tell us something. One reason I wondered about it was because the progression is slow (relatively speaking, I guess) and the nerve stuff is on both sides of my body, which I believe is typical for CIDP. How did you get diagnosed? Was it by a neurologist? What tests confirmed it?

REPLY
@timsdeece

Hi I just joined this forum and I thought I'd share my story. I'll summarise as best as I can. Like many people here, I'm still searching for answers and a solution.

Male, 28 y/o, slim, non-smoker, non-drinker, plant-based diet.
In mid 2017 (26 y/o) I started suffering lumbar spine pain; I thought at the time presumably due to intense weightlifting, long distance running and not taking care of my body. It just worsened and I had two acute overnight attacks of radicular nerve pain down the back of my left leg. By Dec. 2017 I could not sit in a chair anymore and the nerve pain down the back of the left leg was becoming chronic. It went from the top of the glute all the way to the heel. MRI showed a single moderately diseased disc at L4/L5 but there was no neurocompression (no big bulge / herniation and no stenosis). All other spinal segments were free of disease. I continued to worsen. I started to get tingling on both of my thighs while walking. I met a new physio in Mar. 2018. He gave me new exercises to do. By this time standing and walking were getting a bit sore and my lumbar spine was starting to feel very fragile. I couldn't sit any more at all and sleeping was getting tough due to the burning down the back of the left leg.

These new exercises took the situation into explosive mode. I had a very massive and acute exacerbation of my symptoms. Suddenly the nerve pain was incredibly severe and relentless. It was present in both legs anteriorly and posteriorly, left worse than right. My sitting tolerance remained at zero but my standing and walking tolerance went to near zero as well. I was effectively bedbound. But even totally immobile I was in severe pain. There was so much neuropathic pain (very intense burning, prickling etc. sensations). Despite this, I had no neurological deficits (no weakness, reflex problems, muscle loss etc.) I had another MRI and it showed the same as last time: a degenerative disc at L4/L5 but no evidence of neurocompression and all other spinal segments were fine. So my pain was overwhelming and severe, yet the MRI picture didn't explain why.

By all accounts, my spine looked mostly fine. The lack of findings on MRI and the lack of neurological deficits took me into a period of time where it was very difficult to get taken seriously and to get a treatment plan. The doctors, I assume, thought I was being hysterical when describing the pain. My spine was actually tender to touch at the L4 / L5 level, my back 'burned' at this level and my neuropathic pain I subjectively felt radiated from there. It was hypothesised my diseased disc was causing chemical irritation of the nerve roots and also was the cause of the lumbar spine pain – although this would be a very rare presentation given the very banal MRI findings. I had two caudal epidural injections (Oct. / Dec. 2018) and they did not help. They increased lumbar spine pain a lot though for the first 2 – 3 weeks after having them. I had fasciculations in my left heel at night sometimes and it progressively worsened. I had a repeated MRI in Dec. 2018 and a high intensity zone was visualised on the L4 / L5 disc suggesting the presence of annular disruption (this was not confirmed with a discography). In Jan. 2019 I had an artificial disc replacement at L4 / L5 with an LP-ESP disc prosthesis. Actually this operation had positive effects on my lumbar spine pain. I had sitting and standing tolerance restored to mostly normal. So it seems like there was disc pathology involved somehow.

It was a minor victory though, as the operation failed to improve the neuropathic pain in any way. I continued to have severe bilateral neruopathic pain constantly throughout the day. I also started to have lots of stinging and strong bruning in my lumbar spine and these sensations increased with time. Time didn't appear to be imrpoving things and actually fasciculations appeared to be spreading and worsening. It seems that even if the disc was involved, my nerves had become diseased in an of themselves. Despite this, I remained without any neurological deficits. By May. 2019 I had grown totally and utterly despondent with the situation. Pain had destroyed me emotionally. I was begging my doctors to try figure out what the problem was. I must stress, the pain was and is very severe and it is constant. It is so difficult to focus during the day and to get to sleep at night. I am mostly homebound and I wear shorts, even though it's the winter, because fabric seems to worsen it a bit. Any amount of activity (as simple as a short walk) make pain noticeably worse for a few hours before return to base severe pain.

I had an EMG / NCS and this failed to show the presence of any lesions (I'm not sure how rigorous the procedure was) – it was 'unremarkable' for a few peripheral nerves in both legs. I then had a full battery of radiological and lab tests. These included CT lumbar spine scan (no contrast), full spine MRI, brain MRI, SIJ and Pelvis MRI,flexion / extension x-rays and the following bloods: FBC, Comp. Met. Profile, C3, C4, HLA-B27, CTD screen, ANCA, tTG, Rheum. Factor, CCP, CK, CRP, Urate, TSH, Free T4, Vit. D, Albumin, IgG, IgM, IgA, Electrophoresis, ACE, HIV 1+2, Hep B+C, Lyme disease, Ferritin, B12, Folate, HbA1c, PSA, Glucose. I was assessed by a rheumatologist, neurologist and neurosurgeon.

The neurosurgeon did not recommend any further surgical intervention. This makes sense to me as my prosthesis is functioning fine and there is no evidence of nerve entrapment and all other spine segments were free of disease. The rheumatologist said that my lab work and lack of symptoms don't suggest at a systemic illness, this I agree with too. The neurologist wasn't very clear on his opinion, he didn't give a diagnosis but since my EMG / NCS was clean, radiology was clean and my tests were seemingly all fine he referred me for chronic pain management. Of note: the SIJ MRI showed some oedema in the right SIJ joint and some osteophytes but this was considered not clinically significant or explanative of my symptoms of diffuse lumbosacral burning with lumboscral radicular pain which is worse in the left leg.

I had a transforaminal epidural injection and pulsed radiofrequency of the dorsal root ganglion bilaterally at L4 / L5 in late Sept. 2019 and this failed to help at all. It was a painful procedure as well. The next thing to try is apparently a spinal cord stimulator but I feel like this is not going to help.

So here I now am. In summary, I have severe bilateral asymmetric neuropathic pain and fasciculations in both legs as well as intense burning and stinging in my lumbar spine; these symptoms are constant throughout the day and worsen with activity. It does not appear to be improving much with time and in total it has been ~20 months since Mar. 2018 when things went from manageable to insane.

I basically can't fathom why I have such severe, chronic dermatomal pain without any evidence of anything wrong with me (clean imagery, electrophysiology exam, labs and no neurological deficits). Just applying Occam's razor I think something like the following may have happened: my disc tore badly and this prompted a rare non-systemic auto-immune response which affected surrounding tissues. In particular the PNS became chronically inflammed and there was widespread, multi-dermatomal radiculitis. The disc was not dissected for many months, so the nerves potentially maladapted to this. Now they had bad widespread damage, and are struggling to heal. Or else they have healed incompletely. The lesions were not big enough to be found on EMG / NCS yet are enough to cause severe pain (?).

Roughly, I think I could have had a trauma induced self-limiting form of non-diabetic lumbosacral radiculoplexus neuropathy. Or some other kind of non-systemic vasculitic process that is only causing pain and fasciculations.
I have not looked into this much, but I could perhaps also have a small fiber neuropathy?

I recently trialed high dosage corticosteroids (70 mg for 3 weeks, and this was pushed up to 100 mg for the past 4 days). There has been seemingly no improvements to pain or fasciculations from this. I have tried antiepileptic and antidepressant medications (gabapetin, amitriptyline, venlafaxine) and none helped at all, and mostly just messed with my mood and were hard to come off of. I would be very hesitant to keep trying different antiepileptic and antidepressant medications. I have been prescribed ketamine oral syrup 50 mg x 3 a day and it doesn't really seem to help to be honest.

I'm at a loss. I don't see a clear answer here. I have thought about having an MRN and asked my doctor about ordering it recently. Even if it verified abnormalities, I'm not sure what it would mean about a diagnosis, prognosis and treatment. I feel like my body is just fundamentally broken. 20 months is a long time to have spent 'healing' and to see very minimal improvements. 10 of those months my spine has been free of disease as well. Some people have enough damage to case weakness and axonal damage but they improve quite rapidly. I am perplexed.

Well, that's it really. Sorry about the length. I think it's just pain management and waiting to see if it spontaneously resolves.

EDIT: I'll just pre-emptively say that I've tried CBD in various ways, NSAIDs, various physical / physiotherapy protocols, mindfulness / relaxation stuff, therapy for pain depression and none of this stuff helps an iota unfotunately. I genuinely feel like I'm at the end of the road.

Jump to this post

Hello @timsdeece — I see that you recently joined Connect and would like to welcome you. I'm sorry you are having trouble trying to get a diagnosis and find a treatment that helps you. There is another discussion similar to yours where your post may receive more visibility with other members sharing similar symptoms. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion:

> Groups > Brain & Nervous System > Undiagnosed, numbness, tingling, Muscle weakness and more
https://connect.mayoclinic.org/discussion/undiagnosed-numbness-tingling-muscle-weakness-and-more/

@jenniferhunter posted some information in the first post in the above discussion that may be helpful for you. Here is the link to her post in the above discussion: https://connect.mayoclinic.org/discussion/undiagnosed-numbness-tingling-muscle-weakness-and-more/?pg=1#comment-343210

From your post I know that you have seen a lot of different doctors and specialists. Have you thought about getting a second option at a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

REPLY
@johnbishop

Hello @timsdeece — I see that you recently joined Connect and would like to welcome you. I'm sorry you are having trouble trying to get a diagnosis and find a treatment that helps you. There is another discussion similar to yours where your post may receive more visibility with other members sharing similar symptoms. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion:

> Groups > Brain & Nervous System > Undiagnosed, numbness, tingling, Muscle weakness and more
https://connect.mayoclinic.org/discussion/undiagnosed-numbness-tingling-muscle-weakness-and-more/

@jenniferhunter posted some information in the first post in the above discussion that may be helpful for you. Here is the link to her post in the above discussion: https://connect.mayoclinic.org/discussion/undiagnosed-numbness-tingling-muscle-weakness-and-more/?pg=1#comment-343210

From your post I know that you have seen a lot of different doctors and specialists. Have you thought about getting a second option at a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Jump to this post

Hi @johnbishop thank you very much for your comment. I'm reading through that thread you linked, cheers.

With regards to visiting the Mayo Clinic. I actually live in Ireland. It just isn't (currently) economically and physically feasible for me to make such a trip. But thank you for making me aware. Actually, you hardly know if one of the specialists do remote consultations?

REPLY
@timsdeece

Hi @johnbishop thank you very much for your comment. I'm reading through that thread you linked, cheers.

With regards to visiting the Mayo Clinic. I actually live in Ireland. It just isn't (currently) economically and physically feasible for me to make such a trip. But thank you for making me aware. Actually, you hardly know if one of the specialists do remote consultations?

Jump to this post

@timsdeece

I read your pain journal and it makes my sfpn pain seem inconsequential. I didn't notice if you have had muscle or skin puncture tests. I would hate to suggest adding further pain to the unbearable pain you're already experiencing, but if you haven't done those tests they might point you in the right direction. I hope something will soon do that. Does DNA testing indicate any inherited evidence?

I will look forward to hearing from you that you've discovered the culprit.

Jim

REPLY
@timsdeece

Hi I just joined this forum and I thought I'd share my story. I'll summarise as best as I can. Like many people here, I'm still searching for answers and a solution.

Male, 28 y/o, slim, non-smoker, non-drinker, plant-based diet.
In mid 2017 (26 y/o) I started suffering lumbar spine pain; I thought at the time presumably due to intense weightlifting, long distance running and not taking care of my body. It just worsened and I had two acute overnight attacks of radicular nerve pain down the back of my left leg. By Dec. 2017 I could not sit in a chair anymore and the nerve pain down the back of the left leg was becoming chronic. It went from the top of the glute all the way to the heel. MRI showed a single moderately diseased disc at L4/L5 but there was no neurocompression (no big bulge / herniation and no stenosis). All other spinal segments were free of disease. I continued to worsen. I started to get tingling on both of my thighs while walking. I met a new physio in Mar. 2018. He gave me new exercises to do. By this time standing and walking were getting a bit sore and my lumbar spine was starting to feel very fragile. I couldn't sit any more at all and sleeping was getting tough due to the burning down the back of the left leg.

These new exercises took the situation into explosive mode. I had a very massive and acute exacerbation of my symptoms. Suddenly the nerve pain was incredibly severe and relentless. It was present in both legs anteriorly and posteriorly, left worse than right. My sitting tolerance remained at zero but my standing and walking tolerance went to near zero as well. I was effectively bedbound. But even totally immobile I was in severe pain. There was so much neuropathic pain (very intense burning, prickling etc. sensations). Despite this, I had no neurological deficits (no weakness, reflex problems, muscle loss etc.) I had another MRI and it showed the same as last time: a degenerative disc at L4/L5 but no evidence of neurocompression and all other spinal segments were fine. So my pain was overwhelming and severe, yet the MRI picture didn't explain why.

By all accounts, my spine looked mostly fine. The lack of findings on MRI and the lack of neurological deficits took me into a period of time where it was very difficult to get taken seriously and to get a treatment plan. The doctors, I assume, thought I was being hysterical when describing the pain. My spine was actually tender to touch at the L4 / L5 level, my back 'burned' at this level and my neuropathic pain I subjectively felt radiated from there. It was hypothesised my diseased disc was causing chemical irritation of the nerve roots and also was the cause of the lumbar spine pain – although this would be a very rare presentation given the very banal MRI findings. I had two caudal epidural injections (Oct. / Dec. 2018) and they did not help. They increased lumbar spine pain a lot though for the first 2 – 3 weeks after having them. I had fasciculations in my left heel at night sometimes and it progressively worsened. I had a repeated MRI in Dec. 2018 and a high intensity zone was visualised on the L4 / L5 disc suggesting the presence of annular disruption (this was not confirmed with a discography). In Jan. 2019 I had an artificial disc replacement at L4 / L5 with an LP-ESP disc prosthesis. Actually this operation had positive effects on my lumbar spine pain. I had sitting and standing tolerance restored to mostly normal. So it seems like there was disc pathology involved somehow.

It was a minor victory though, as the operation failed to improve the neuropathic pain in any way. I continued to have severe bilateral neruopathic pain constantly throughout the day. I also started to have lots of stinging and strong bruning in my lumbar spine and these sensations increased with time. Time didn't appear to be imrpoving things and actually fasciculations appeared to be spreading and worsening. It seems that even if the disc was involved, my nerves had become diseased in an of themselves. Despite this, I remained without any neurological deficits. By May. 2019 I had grown totally and utterly despondent with the situation. Pain had destroyed me emotionally. I was begging my doctors to try figure out what the problem was. I must stress, the pain was and is very severe and it is constant. It is so difficult to focus during the day and to get to sleep at night. I am mostly homebound and I wear shorts, even though it's the winter, because fabric seems to worsen it a bit. Any amount of activity (as simple as a short walk) make pain noticeably worse for a few hours before return to base severe pain.

I had an EMG / NCS and this failed to show the presence of any lesions (I'm not sure how rigorous the procedure was) – it was 'unremarkable' for a few peripheral nerves in both legs. I then had a full battery of radiological and lab tests. These included CT lumbar spine scan (no contrast), full spine MRI, brain MRI, SIJ and Pelvis MRI,flexion / extension x-rays and the following bloods: FBC, Comp. Met. Profile, C3, C4, HLA-B27, CTD screen, ANCA, tTG, Rheum. Factor, CCP, CK, CRP, Urate, TSH, Free T4, Vit. D, Albumin, IgG, IgM, IgA, Electrophoresis, ACE, HIV 1+2, Hep B+C, Lyme disease, Ferritin, B12, Folate, HbA1c, PSA, Glucose. I was assessed by a rheumatologist, neurologist and neurosurgeon.

The neurosurgeon did not recommend any further surgical intervention. This makes sense to me as my prosthesis is functioning fine and there is no evidence of nerve entrapment and all other spine segments were free of disease. The rheumatologist said that my lab work and lack of symptoms don't suggest at a systemic illness, this I agree with too. The neurologist wasn't very clear on his opinion, he didn't give a diagnosis but since my EMG / NCS was clean, radiology was clean and my tests were seemingly all fine he referred me for chronic pain management. Of note: the SIJ MRI showed some oedema in the right SIJ joint and some osteophytes but this was considered not clinically significant or explanative of my symptoms of diffuse lumbosacral burning with lumboscral radicular pain which is worse in the left leg.

I had a transforaminal epidural injection and pulsed radiofrequency of the dorsal root ganglion bilaterally at L4 / L5 in late Sept. 2019 and this failed to help at all. It was a painful procedure as well. The next thing to try is apparently a spinal cord stimulator but I feel like this is not going to help.

So here I now am. In summary, I have severe bilateral asymmetric neuropathic pain and fasciculations in both legs as well as intense burning and stinging in my lumbar spine; these symptoms are constant throughout the day and worsen with activity. It does not appear to be improving much with time and in total it has been ~20 months since Mar. 2018 when things went from manageable to insane.

I basically can't fathom why I have such severe, chronic dermatomal pain without any evidence of anything wrong with me (clean imagery, electrophysiology exam, labs and no neurological deficits). Just applying Occam's razor I think something like the following may have happened: my disc tore badly and this prompted a rare non-systemic auto-immune response which affected surrounding tissues. In particular the PNS became chronically inflammed and there was widespread, multi-dermatomal radiculitis. The disc was not dissected for many months, so the nerves potentially maladapted to this. Now they had bad widespread damage, and are struggling to heal. Or else they have healed incompletely. The lesions were not big enough to be found on EMG / NCS yet are enough to cause severe pain (?).

Roughly, I think I could have had a trauma induced self-limiting form of non-diabetic lumbosacral radiculoplexus neuropathy. Or some other kind of non-systemic vasculitic process that is only causing pain and fasciculations.
I have not looked into this much, but I could perhaps also have a small fiber neuropathy?

I recently trialed high dosage corticosteroids (70 mg for 3 weeks, and this was pushed up to 100 mg for the past 4 days). There has been seemingly no improvements to pain or fasciculations from this. I have tried antiepileptic and antidepressant medications (gabapetin, amitriptyline, venlafaxine) and none helped at all, and mostly just messed with my mood and were hard to come off of. I would be very hesitant to keep trying different antiepileptic and antidepressant medications. I have been prescribed ketamine oral syrup 50 mg x 3 a day and it doesn't really seem to help to be honest.

I'm at a loss. I don't see a clear answer here. I have thought about having an MRN and asked my doctor about ordering it recently. Even if it verified abnormalities, I'm not sure what it would mean about a diagnosis, prognosis and treatment. I feel like my body is just fundamentally broken. 20 months is a long time to have spent 'healing' and to see very minimal improvements. 10 of those months my spine has been free of disease as well. Some people have enough damage to case weakness and axonal damage but they improve quite rapidly. I am perplexed.

Well, that's it really. Sorry about the length. I think it's just pain management and waiting to see if it spontaneously resolves.

EDIT: I'll just pre-emptively say that I've tried CBD in various ways, NSAIDs, various physical / physiotherapy protocols, mindfulness / relaxation stuff, therapy for pain depression and none of this stuff helps an iota unfotunately. I genuinely feel like I'm at the end of the road.

Jump to this post

Hi @jimhd and thanks for your comment. I guess we all suffer a lot no matter what end of the spectrum we are with regards our pain levels. It's very tough being in chronic pain. It does seem like I was hit with something particularly nefarious though, unfortunately 🙁 I have had no muscle or skin puncture test. Excuse my ignorance, but is this the same or a different procedure to a skin biopsy? (which I've also not had).
I was also thinking about asking about a nerve biopsy along one of the dermatomes where I describe pain or get fasciculations. But I feel like this won't be offered to me due to lack of EMG / NCS finding.
If the DNA testing you mean are from the blood tests I listed (like HLA-B27) then the answer is no, I tested negatively for that gene. I tested negatively for everything and / or all numbers were normal with one exception: I had vitamin D insufficiency (not deficiency). I am supplementing for that now… presumably it was caused by being caucasian and stuck indoors for 20 months… welp!

EDIT: just adding this comment here because I can't seem to edit my main post at the moment. I also have had skin rash and discoloration along two dermatomes. Steroid cream helped reduce the rash, but I was left with permanent skin discoloration. My left foot is hotter than my right. In general the left extremity is much worse than right. Although the symptoms seem symmetric, just not at the same intensity, which is what makes it asymmetric.

REPLY
@timsdeece

Hi @jimhd and thanks for your comment. I guess we all suffer a lot no matter what end of the spectrum we are with regards our pain levels. It's very tough being in chronic pain. It does seem like I was hit with something particularly nefarious though, unfortunately 🙁 I have had no muscle or skin puncture test. Excuse my ignorance, but is this the same or a different procedure to a skin biopsy? (which I've also not had).
I was also thinking about asking about a nerve biopsy along one of the dermatomes where I describe pain or get fasciculations. But I feel like this won't be offered to me due to lack of EMG / NCS finding.
If the DNA testing you mean are from the blood tests I listed (like HLA-B27) then the answer is no, I tested negatively for that gene. I tested negatively for everything and / or all numbers were normal with one exception: I had vitamin D insufficiency (not deficiency). I am supplementing for that now… presumably it was caused by being caucasian and stuck indoors for 20 months… welp!

EDIT: just adding this comment here because I can't seem to edit my main post at the moment. I also have had skin rash and discoloration along two dermatomes. Steroid cream helped reduce the rash, but I was left with permanent skin discoloration. My left foot is hotter than my right. In general the left extremity is much worse than right. Although the symptoms seem symmetric, just not at the same intensity, which is what makes it asymmetric.

Jump to this post

Hello and welcome. I'm sad to read your story especially at your age. A few thoughts…I do feel a missing puzzle piece is the Skin Punch Biopsy, given your circumstances. This procedure is typically performed when EMG/Nerve conduction studies prove normal. Given what I'm hearing, my opinion is that it should be ruled out as to not conclude Small Fiber Neuropathy. Genetic testing and spinal tap for auto immune deficiency findings may also be worthy (if not done already). Sending well wishes all the wayyyyyy
to Ireland. Best of luck in your journey.
Rachel

REPLY
@timsdeece

Hi I just joined this forum and I thought I'd share my story. I'll summarise as best as I can. Like many people here, I'm still searching for answers and a solution.

Male, 28 y/o, slim, non-smoker, non-drinker, plant-based diet.
In mid 2017 (26 y/o) I started suffering lumbar spine pain; I thought at the time presumably due to intense weightlifting, long distance running and not taking care of my body. It just worsened and I had two acute overnight attacks of radicular nerve pain down the back of my left leg. By Dec. 2017 I could not sit in a chair anymore and the nerve pain down the back of the left leg was becoming chronic. It went from the top of the glute all the way to the heel. MRI showed a single moderately diseased disc at L4/L5 but there was no neurocompression (no big bulge / herniation and no stenosis). All other spinal segments were free of disease. I continued to worsen. I started to get tingling on both of my thighs while walking. I met a new physio in Mar. 2018. He gave me new exercises to do. By this time standing and walking were getting a bit sore and my lumbar spine was starting to feel very fragile. I couldn't sit any more at all and sleeping was getting tough due to the burning down the back of the left leg.

These new exercises took the situation into explosive mode. I had a very massive and acute exacerbation of my symptoms. Suddenly the nerve pain was incredibly severe and relentless. It was present in both legs anteriorly and posteriorly, left worse than right. My sitting tolerance remained at zero but my standing and walking tolerance went to near zero as well. I was effectively bedbound. But even totally immobile I was in severe pain. There was so much neuropathic pain (very intense burning, prickling etc. sensations). Despite this, I had no neurological deficits (no weakness, reflex problems, muscle loss etc.) I had another MRI and it showed the same as last time: a degenerative disc at L4/L5 but no evidence of neurocompression and all other spinal segments were fine. So my pain was overwhelming and severe, yet the MRI picture didn't explain why.

By all accounts, my spine looked mostly fine. The lack of findings on MRI and the lack of neurological deficits took me into a period of time where it was very difficult to get taken seriously and to get a treatment plan. The doctors, I assume, thought I was being hysterical when describing the pain. My spine was actually tender to touch at the L4 / L5 level, my back 'burned' at this level and my neuropathic pain I subjectively felt radiated from there. It was hypothesised my diseased disc was causing chemical irritation of the nerve roots and also was the cause of the lumbar spine pain – although this would be a very rare presentation given the very banal MRI findings. I had two caudal epidural injections (Oct. / Dec. 2018) and they did not help. They increased lumbar spine pain a lot though for the first 2 – 3 weeks after having them. I had fasciculations in my left heel at night sometimes and it progressively worsened. I had a repeated MRI in Dec. 2018 and a high intensity zone was visualised on the L4 / L5 disc suggesting the presence of annular disruption (this was not confirmed with a discography). In Jan. 2019 I had an artificial disc replacement at L4 / L5 with an LP-ESP disc prosthesis. Actually this operation had positive effects on my lumbar spine pain. I had sitting and standing tolerance restored to mostly normal. So it seems like there was disc pathology involved somehow.

It was a minor victory though, as the operation failed to improve the neuropathic pain in any way. I continued to have severe bilateral neruopathic pain constantly throughout the day. I also started to have lots of stinging and strong bruning in my lumbar spine and these sensations increased with time. Time didn't appear to be imrpoving things and actually fasciculations appeared to be spreading and worsening. It seems that even if the disc was involved, my nerves had become diseased in an of themselves. Despite this, I remained without any neurological deficits. By May. 2019 I had grown totally and utterly despondent with the situation. Pain had destroyed me emotionally. I was begging my doctors to try figure out what the problem was. I must stress, the pain was and is very severe and it is constant. It is so difficult to focus during the day and to get to sleep at night. I am mostly homebound and I wear shorts, even though it's the winter, because fabric seems to worsen it a bit. Any amount of activity (as simple as a short walk) make pain noticeably worse for a few hours before return to base severe pain.

I had an EMG / NCS and this failed to show the presence of any lesions (I'm not sure how rigorous the procedure was) – it was 'unremarkable' for a few peripheral nerves in both legs. I then had a full battery of radiological and lab tests. These included CT lumbar spine scan (no contrast), full spine MRI, brain MRI, SIJ and Pelvis MRI,flexion / extension x-rays and the following bloods: FBC, Comp. Met. Profile, C3, C4, HLA-B27, CTD screen, ANCA, tTG, Rheum. Factor, CCP, CK, CRP, Urate, TSH, Free T4, Vit. D, Albumin, IgG, IgM, IgA, Electrophoresis, ACE, HIV 1+2, Hep B+C, Lyme disease, Ferritin, B12, Folate, HbA1c, PSA, Glucose. I was assessed by a rheumatologist, neurologist and neurosurgeon.

The neurosurgeon did not recommend any further surgical intervention. This makes sense to me as my prosthesis is functioning fine and there is no evidence of nerve entrapment and all other spine segments were free of disease. The rheumatologist said that my lab work and lack of symptoms don't suggest at a systemic illness, this I agree with too. The neurologist wasn't very clear on his opinion, he didn't give a diagnosis but since my EMG / NCS was clean, radiology was clean and my tests were seemingly all fine he referred me for chronic pain management. Of note: the SIJ MRI showed some oedema in the right SIJ joint and some osteophytes but this was considered not clinically significant or explanative of my symptoms of diffuse lumbosacral burning with lumboscral radicular pain which is worse in the left leg.

I had a transforaminal epidural injection and pulsed radiofrequency of the dorsal root ganglion bilaterally at L4 / L5 in late Sept. 2019 and this failed to help at all. It was a painful procedure as well. The next thing to try is apparently a spinal cord stimulator but I feel like this is not going to help.

So here I now am. In summary, I have severe bilateral asymmetric neuropathic pain and fasciculations in both legs as well as intense burning and stinging in my lumbar spine; these symptoms are constant throughout the day and worsen with activity. It does not appear to be improving much with time and in total it has been ~20 months since Mar. 2018 when things went from manageable to insane.

I basically can't fathom why I have such severe, chronic dermatomal pain without any evidence of anything wrong with me (clean imagery, electrophysiology exam, labs and no neurological deficits). Just applying Occam's razor I think something like the following may have happened: my disc tore badly and this prompted a rare non-systemic auto-immune response which affected surrounding tissues. In particular the PNS became chronically inflammed and there was widespread, multi-dermatomal radiculitis. The disc was not dissected for many months, so the nerves potentially maladapted to this. Now they had bad widespread damage, and are struggling to heal. Or else they have healed incompletely. The lesions were not big enough to be found on EMG / NCS yet are enough to cause severe pain (?).

Roughly, I think I could have had a trauma induced self-limiting form of non-diabetic lumbosacral radiculoplexus neuropathy. Or some other kind of non-systemic vasculitic process that is only causing pain and fasciculations.
I have not looked into this much, but I could perhaps also have a small fiber neuropathy?

I recently trialed high dosage corticosteroids (70 mg for 3 weeks, and this was pushed up to 100 mg for the past 4 days). There has been seemingly no improvements to pain or fasciculations from this. I have tried antiepileptic and antidepressant medications (gabapetin, amitriptyline, venlafaxine) and none helped at all, and mostly just messed with my mood and were hard to come off of. I would be very hesitant to keep trying different antiepileptic and antidepressant medications. I have been prescribed ketamine oral syrup 50 mg x 3 a day and it doesn't really seem to help to be honest.

I'm at a loss. I don't see a clear answer here. I have thought about having an MRN and asked my doctor about ordering it recently. Even if it verified abnormalities, I'm not sure what it would mean about a diagnosis, prognosis and treatment. I feel like my body is just fundamentally broken. 20 months is a long time to have spent 'healing' and to see very minimal improvements. 10 of those months my spine has been free of disease as well. Some people have enough damage to case weakness and axonal damage but they improve quite rapidly. I am perplexed.

Well, that's it really. Sorry about the length. I think it's just pain management and waiting to see if it spontaneously resolves.

EDIT: I'll just pre-emptively say that I've tried CBD in various ways, NSAIDs, various physical / physiotherapy protocols, mindfulness / relaxation stuff, therapy for pain depression and none of this stuff helps an iota unfotunately. I genuinely feel like I'm at the end of the road.

Jump to this post

@timsdeece Hi Tim. What I'm thinking from your story is that the pain may not be spine related, it may be a physical problem. There are syndromes involving the pelvis and it's alignment that cause sciatic pain and mimic spine problems, and you also describe some edema in the right SI joint which says to me that there may be misalignment, but I'm not a doctor. Perhaps someone could read your imaging and look for pelvis alignment issues that can cause nerve entrapment. Your tests are indicating that your nerve conduction is normal, so this might make sense. I have have SI joints that don't always stay where they belong and it causes my pelvis to twist out of shape. Sometimes there is an upslip on one side, or an inflare of the ilium bone. With your history of running, you could have a similar issue. When my pelvis is out, I do get pain on one side of my low back, and realigning fixes it and I have had sciatic pain from time to time. I do also have a bulging lumbar disc that is asymptomatic and will crack and reset itself on rotation. I also have thoracic outlet syndrome and have general body tightness from my jaw/neck to my pelvis and ankle. The physical therapy I do for this is fascial stretching with the John Barnes methods. You've also had surgery, and that creates scar tissue and tightness in the fascia and will tighten any tightness that is there. I have been doing MFR for several years and it helped me have a great recovery from my spine surgery which was a C5/C6 fusion for cervical stenosis. When you learn about MFR, you can also learn to self treat with stretches between your therapy visits. In addition to MFR after my spine surgery, what has helped me the most strength-wise is riding my horse and building core strength by doing that with good posture. MFR is a process of releasing tight layers and may take many sessions to work, but you may notice it helping right away, but in smaller steps. It has helped me a lot, and it will get the body aligned and moving better.

There is a physical therapist in Norway who writes about this syndrome and he has a lot of good articles on his website. Check it out and see what you think. Here is the link. He writes for physical therapists, so it is very detailed.
Entrapment syndromes of the lumbar plexus https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

You may also want to read about myofascial release as there is a lot of information in our Connect discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Here is a link to some MFR therapists in the UK. I didn't see any listings for Ireland.
https://www.mfrtherapists.com/app/list.asp?state=&country=UK
I hope some of this will help. I have to say that I love Ireland and have been there once. It's a beautiful country. My grandmother came to America from Cork on a steam ship 5 years before Titanic. I came across from England on the ferry into Waterford, and I still have relatives in County Mayo. If any of this helps you, I hope you'll check back in and let us know how you are doing. You could use the luck of the Irish about now.

REPLY
@timsdeece

Hi @jimhd and thanks for your comment. I guess we all suffer a lot no matter what end of the spectrum we are with regards our pain levels. It's very tough being in chronic pain. It does seem like I was hit with something particularly nefarious though, unfortunately 🙁 I have had no muscle or skin puncture test. Excuse my ignorance, but is this the same or a different procedure to a skin biopsy? (which I've also not had).
I was also thinking about asking about a nerve biopsy along one of the dermatomes where I describe pain or get fasciculations. But I feel like this won't be offered to me due to lack of EMG / NCS finding.
If the DNA testing you mean are from the blood tests I listed (like HLA-B27) then the answer is no, I tested negatively for that gene. I tested negatively for everything and / or all numbers were normal with one exception: I had vitamin D insufficiency (not deficiency). I am supplementing for that now… presumably it was caused by being caucasian and stuck indoors for 20 months… welp!

EDIT: just adding this comment here because I can't seem to edit my main post at the moment. I also have had skin rash and discoloration along two dermatomes. Steroid cream helped reduce the rash, but I was left with permanent skin discoloration. My left foot is hotter than my right. In general the left extremity is much worse than right. Although the symptoms seem symmetric, just not at the same intensity, which is what makes it asymmetric.

Jump to this post

@timsdeece

Rachel also referred to the skin puncture test. I had it done in the neurologist's office and if it was painful, I would probably remember more details. A muscle puncture test was done at the university hospital in Portland, Oregon, about 3 hours from my home. Unlike the skin puncture, the muscle puncture test was painful. The tech put a large bore needle in, and I was to flex that muscle. He did 4 punctures, starting in my hip, and progressing downward, the last one being at the base of my toes. It was bizarre that I felt nothing when he did that last one on the top of my foot. I learned a lesson from that – never walk barefoot because I could hurt myself without knowing it. I haven't walked barefoot for a long time because it's painful in the balls of my feet. I don't understand how my feet can be numb and at the same time be painful.

The skin puncture revealed that I have SFPN, idiopathic. I think the muscle puncture was to assess how far up my legs the neuropathy was doing its thing.

Jim

REPLY

Hi I just joined this forum and I thought I'd share my story. I'll summarise as best as I can. Like many people here, I'm still searching for answers and a solution.

Male, 28 y/o, slim, non-smoker, non-drinker, plant-based diet.
In mid 2017 (26 y/o) I started suffering lumbar spine pain; I thought at the time presumably due to intense weightlifting, long distance running and not taking care of my body. It just worsened and I had two acute overnight attacks of radicular nerve pain down the back of my left leg. By Dec. 2017 I could not sit in a chair anymore and the nerve pain down the back of the left leg was becoming chronic. It went from the top of the glute all the way to the heel. MRI showed a single moderately diseased disc at L4/L5 but there was no neurocompression (no big bulge / herniation and no stenosis). All other spinal segments were free of disease. I continued to worsen. I started to get tingling on both of my thighs while walking. I met a new physio in Mar. 2018. He gave me new exercises to do. By this time standing and walking were getting a bit sore and my lumbar spine was starting to feel very fragile. I couldn't sit any more at all and sleeping was getting tough due to the burning down the back of the left leg.

These new exercises took the situation into explosive mode. I had a very massive and acute exacerbation of my symptoms. Suddenly the nerve pain was incredibly severe and relentless. It was present in both legs anteriorly and posteriorly, left worse than right. My sitting tolerance remained at zero but my standing and walking tolerance went to near zero as well. I was effectively bedbound. But even totally immobile I was in severe pain. There was so much neuropathic pain (very intense burning, prickling etc. sensations). Despite this, I had no neurological deficits (no weakness, reflex problems, muscle loss etc.) I had another MRI and it showed the same as last time: a degenerative disc at L4/L5 but no evidence of neurocompression and all other spinal segments were fine. So my pain was overwhelming and severe, yet the MRI picture didn't explain why.

By all accounts, my spine looked mostly fine. The lack of findings on MRI and the lack of neurological deficits took me into a period of time where it was very difficult to get taken seriously and to get a treatment plan. The doctors, I assume, thought I was being hysterical when describing the pain. My spine was actually tender to touch at the L4 / L5 level, my back 'burned' at this level and my neuropathic pain I subjectively felt radiated from there. It was hypothesised my diseased disc was causing chemical irritation of the nerve roots and also was the cause of the lumbar spine pain – although this would be a very rare presentation given the very banal MRI findings. I had two caudal epidural injections (Oct. / Dec. 2018) and they did not help. They increased lumbar spine pain a lot though for the first 2 – 3 weeks after having them. I had fasciculations in my left heel at night sometimes and it progressively worsened. I had a repeated MRI in Dec. 2018 and a high intensity zone was visualised on the L4 / L5 disc suggesting the presence of annular disruption (this was not confirmed with a discography). In Jan. 2019 I had an artificial disc replacement at L4 / L5 with an LP-ESP disc prosthesis. Actually this operation had positive effects on my lumbar spine pain. I had sitting and standing tolerance restored to mostly normal. So it seems like there was disc pathology involved somehow.

It was a minor victory though, as the operation failed to improve the neuropathic pain in any way. I continued to have severe bilateral neruopathic pain constantly throughout the day. I also started to have lots of stinging and strong bruning in my lumbar spine and these sensations increased with time. Time didn't appear to be imrpoving things and actually fasciculations appeared to be spreading and worsening. It seems that even if the disc was involved, my nerves had become diseased in an of themselves. Despite this, I remained without any neurological deficits. By May. 2019 I had grown totally and utterly despondent with the situation. Pain had destroyed me emotionally. I was begging my doctors to try figure out what the problem was. I must stress, the pain was and is very severe and it is constant. It is so difficult to focus during the day and to get to sleep at night. I am mostly homebound and I wear shorts, even though it's the winter, because fabric seems to worsen it a bit. Any amount of activity (as simple as a short walk) make pain noticeably worse for a few hours before return to base severe pain.

I had an EMG / NCS and this failed to show the presence of any lesions (I'm not sure how rigorous the procedure was) – it was 'unremarkable' for a few peripheral nerves in both legs. I then had a full battery of radiological and lab tests. These included CT lumbar spine scan (no contrast), full spine MRI, brain MRI, SIJ and Pelvis MRI,flexion / extension x-rays and the following bloods: FBC, Comp. Met. Profile, C3, C4, HLA-B27, CTD screen, ANCA, tTG, Rheum. Factor, CCP, CK, CRP, Urate, TSH, Free T4, Vit. D, Albumin, IgG, IgM, IgA, Electrophoresis, ACE, HIV 1+2, Hep B+C, Lyme disease, Ferritin, B12, Folate, HbA1c, PSA, Glucose. I was assessed by a rheumatologist, neurologist and neurosurgeon.

The neurosurgeon did not recommend any further surgical intervention. This makes sense to me as my prosthesis is functioning fine and there is no evidence of nerve entrapment and all other spine segments were free of disease. The rheumatologist said that my lab work and lack of symptoms don't suggest at a systemic illness, this I agree with too. The neurologist wasn't very clear on his opinion, he didn't give a diagnosis but since my EMG / NCS was clean, radiology was clean and my tests were seemingly all fine he referred me for chronic pain management. Of note: the SIJ MRI showed some oedema in the right SIJ joint and some osteophytes but this was considered not clinically significant or explanative of my symptoms of diffuse lumbosacral burning with lumboscral radicular pain which is worse in the left leg.

I had a transforaminal epidural injection and pulsed radiofrequency of the dorsal root ganglion bilaterally at L4 / L5 in late Sept. 2019 and this failed to help at all. It was a painful procedure as well. The next thing to try is apparently a spinal cord stimulator but I feel like this is not going to help.

So here I now am. In summary, I have severe bilateral asymmetric neuropathic pain and fasciculations in both legs as well as intense burning and stinging in my lumbar spine; these symptoms are constant throughout the day and worsen with activity. It does not appear to be improving much with time and in total it has been ~20 months since Mar. 2018 when things went from manageable to insane.

I basically can't fathom why I have such severe, chronic dermatomal pain without any evidence of anything wrong with me (clean imagery, electrophysiology exam, labs and no neurological deficits). Just applying Occam's razor I think something like the following may have happened: my disc tore badly and this prompted a rare non-systemic auto-immune response which affected surrounding tissues. In particular the PNS became chronically inflammed and there was widespread, multi-dermatomal radiculitis. The disc was not dissected for many months, so the nerves potentially maladapted to this. Now they had bad widespread damage, and are struggling to heal. Or else they have healed incompletely. The lesions were not big enough to be found on EMG / NCS yet are enough to cause severe pain (?).

Roughly, I think I could have had a trauma induced self-limiting form of non-diabetic lumbosacral radiculoplexus neuropathy. Or some other kind of non-systemic vasculitic process that is only causing pain and fasciculations.
I have not looked into this much, but I could perhaps also have a small fiber neuropathy?

I recently trialed high dosage corticosteroids (70 mg for 3 weeks, and this was pushed up to 100 mg for the past 4 days). There has been seemingly no improvements to pain or fasciculations from this. I have tried antiepileptic and antidepressant medications (gabapetin, amitriptyline, venlafaxine) and none helped at all, and mostly just messed with my mood and were hard to come off of. I would be very hesitant to keep trying different antiepileptic and antidepressant medications. I have been prescribed ketamine oral syrup 50 mg x 3 a day and it doesn't really seem to help to be honest.

I'm at a loss. I don't see a clear answer here. I have thought about having an MRN and asked my doctor about ordering it recently. Even if it verified abnormalities, I'm not sure what it would mean about a diagnosis, prognosis and treatment. I feel like my body is just fundamentally broken. 20 months is a long time to have spent 'healing' and to see very minimal improvements. 10 of those months my spine has been free of disease as well. Some people have enough damage to case weakness and axonal damage but they improve quite rapidly. I am perplexed.

Well, that's it really. Sorry about the length. I think it's just pain management and waiting to see if it spontaneously resolves.

EDIT: I'll just pre-emptively say that I've tried CBD in various ways, NSAIDs, various physical / physiotherapy protocols, mindfulness / relaxation stuff, therapy for pain depression and none of this stuff helps an iota unfotunately. I genuinely feel like I'm at the end of the road.

REPLY
@timsdeece

Hi I just joined this forum and I thought I'd share my story. I'll summarise as best as I can. Like many people here, I'm still searching for answers and a solution.

Male, 28 y/o, slim, non-smoker, non-drinker, plant-based diet.
In mid 2017 (26 y/o) I started suffering lumbar spine pain; I thought at the time presumably due to intense weightlifting, long distance running and not taking care of my body. It just worsened and I had two acute overnight attacks of radicular nerve pain down the back of my left leg. By Dec. 2017 I could not sit in a chair anymore and the nerve pain down the back of the left leg was becoming chronic. It went from the top of the glute all the way to the heel. MRI showed a single moderately diseased disc at L4/L5 but there was no neurocompression (no big bulge / herniation and no stenosis). All other spinal segments were free of disease. I continued to worsen. I started to get tingling on both of my thighs while walking. I met a new physio in Mar. 2018. He gave me new exercises to do. By this time standing and walking were getting a bit sore and my lumbar spine was starting to feel very fragile. I couldn't sit any more at all and sleeping was getting tough due to the burning down the back of the left leg.

These new exercises took the situation into explosive mode. I had a very massive and acute exacerbation of my symptoms. Suddenly the nerve pain was incredibly severe and relentless. It was present in both legs anteriorly and posteriorly, left worse than right. My sitting tolerance remained at zero but my standing and walking tolerance went to near zero as well. I was effectively bedbound. But even totally immobile I was in severe pain. There was so much neuropathic pain (very intense burning, prickling etc. sensations). Despite this, I had no neurological deficits (no weakness, reflex problems, muscle loss etc.) I had another MRI and it showed the same as last time: a degenerative disc at L4/L5 but no evidence of neurocompression and all other spinal segments were fine. So my pain was overwhelming and severe, yet the MRI picture didn't explain why.

By all accounts, my spine looked mostly fine. The lack of findings on MRI and the lack of neurological deficits took me into a period of time where it was very difficult to get taken seriously and to get a treatment plan. The doctors, I assume, thought I was being hysterical when describing the pain. My spine was actually tender to touch at the L4 / L5 level, my back 'burned' at this level and my neuropathic pain I subjectively felt radiated from there. It was hypothesised my diseased disc was causing chemical irritation of the nerve roots and also was the cause of the lumbar spine pain – although this would be a very rare presentation given the very banal MRI findings. I had two caudal epidural injections (Oct. / Dec. 2018) and they did not help. They increased lumbar spine pain a lot though for the first 2 – 3 weeks after having them. I had fasciculations in my left heel at night sometimes and it progressively worsened. I had a repeated MRI in Dec. 2018 and a high intensity zone was visualised on the L4 / L5 disc suggesting the presence of annular disruption (this was not confirmed with a discography). In Jan. 2019 I had an artificial disc replacement at L4 / L5 with an LP-ESP disc prosthesis. Actually this operation had positive effects on my lumbar spine pain. I had sitting and standing tolerance restored to mostly normal. So it seems like there was disc pathology involved somehow.

It was a minor victory though, as the operation failed to improve the neuropathic pain in any way. I continued to have severe bilateral neruopathic pain constantly throughout the day. I also started to have lots of stinging and strong bruning in my lumbar spine and these sensations increased with time. Time didn't appear to be imrpoving things and actually fasciculations appeared to be spreading and worsening. It seems that even if the disc was involved, my nerves had become diseased in an of themselves. Despite this, I remained without any neurological deficits. By May. 2019 I had grown totally and utterly despondent with the situation. Pain had destroyed me emotionally. I was begging my doctors to try figure out what the problem was. I must stress, the pain was and is very severe and it is constant. It is so difficult to focus during the day and to get to sleep at night. I am mostly homebound and I wear shorts, even though it's the winter, because fabric seems to worsen it a bit. Any amount of activity (as simple as a short walk) make pain noticeably worse for a few hours before return to base severe pain.

I had an EMG / NCS and this failed to show the presence of any lesions (I'm not sure how rigorous the procedure was) – it was 'unremarkable' for a few peripheral nerves in both legs. I then had a full battery of radiological and lab tests. These included CT lumbar spine scan (no contrast), full spine MRI, brain MRI, SIJ and Pelvis MRI,flexion / extension x-rays and the following bloods: FBC, Comp. Met. Profile, C3, C4, HLA-B27, CTD screen, ANCA, tTG, Rheum. Factor, CCP, CK, CRP, Urate, TSH, Free T4, Vit. D, Albumin, IgG, IgM, IgA, Electrophoresis, ACE, HIV 1+2, Hep B+C, Lyme disease, Ferritin, B12, Folate, HbA1c, PSA, Glucose. I was assessed by a rheumatologist, neurologist and neurosurgeon.

The neurosurgeon did not recommend any further surgical intervention. This makes sense to me as my prosthesis is functioning fine and there is no evidence of nerve entrapment and all other spine segments were free of disease. The rheumatologist said that my lab work and lack of symptoms don't suggest at a systemic illness, this I agree with too. The neurologist wasn't very clear on his opinion, he didn't give a diagnosis but since my EMG / NCS was clean, radiology was clean and my tests were seemingly all fine he referred me for chronic pain management. Of note: the SIJ MRI showed some oedema in the right SIJ joint and some osteophytes but this was considered not clinically significant or explanative of my symptoms of diffuse lumbosacral burning with lumboscral radicular pain which is worse in the left leg.

I had a transforaminal epidural injection and pulsed radiofrequency of the dorsal root ganglion bilaterally at L4 / L5 in late Sept. 2019 and this failed to help at all. It was a painful procedure as well. The next thing to try is apparently a spinal cord stimulator but I feel like this is not going to help.

So here I now am. In summary, I have severe bilateral asymmetric neuropathic pain and fasciculations in both legs as well as intense burning and stinging in my lumbar spine; these symptoms are constant throughout the day and worsen with activity. It does not appear to be improving much with time and in total it has been ~20 months since Mar. 2018 when things went from manageable to insane.

I basically can't fathom why I have such severe, chronic dermatomal pain without any evidence of anything wrong with me (clean imagery, electrophysiology exam, labs and no neurological deficits). Just applying Occam's razor I think something like the following may have happened: my disc tore badly and this prompted a rare non-systemic auto-immune response which affected surrounding tissues. In particular the PNS became chronically inflammed and there was widespread, multi-dermatomal radiculitis. The disc was not dissected for many months, so the nerves potentially maladapted to this. Now they had bad widespread damage, and are struggling to heal. Or else they have healed incompletely. The lesions were not big enough to be found on EMG / NCS yet are enough to cause severe pain (?).

Roughly, I think I could have had a trauma induced self-limiting form of non-diabetic lumbosacral radiculoplexus neuropathy. Or some other kind of non-systemic vasculitic process that is only causing pain and fasciculations.
I have not looked into this much, but I could perhaps also have a small fiber neuropathy?

I recently trialed high dosage corticosteroids (70 mg for 3 weeks, and this was pushed up to 100 mg for the past 4 days). There has been seemingly no improvements to pain or fasciculations from this. I have tried antiepileptic and antidepressant medications (gabapetin, amitriptyline, venlafaxine) and none helped at all, and mostly just messed with my mood and were hard to come off of. I would be very hesitant to keep trying different antiepileptic and antidepressant medications. I have been prescribed ketamine oral syrup 50 mg x 3 a day and it doesn't really seem to help to be honest.

I'm at a loss. I don't see a clear answer here. I have thought about having an MRN and asked my doctor about ordering it recently. Even if it verified abnormalities, I'm not sure what it would mean about a diagnosis, prognosis and treatment. I feel like my body is just fundamentally broken. 20 months is a long time to have spent 'healing' and to see very minimal improvements. 10 of those months my spine has been free of disease as well. Some people have enough damage to case weakness and axonal damage but they improve quite rapidly. I am perplexed.

Well, that's it really. Sorry about the length. I think it's just pain management and waiting to see if it spontaneously resolves.

EDIT: I'll just pre-emptively say that I've tried CBD in various ways, NSAIDs, various physical / physiotherapy protocols, mindfulness / relaxation stuff, therapy for pain depression and none of this stuff helps an iota unfotunately. I genuinely feel like I'm at the end of the road.

Jump to this post

@timsdeece

Be assured that you're not alone at the end of the road. There are many of us hanging out in that very place

Jim

REPLY
@timsdeece

Hi I just joined this forum and I thought I'd share my story. I'll summarise as best as I can. Like many people here, I'm still searching for answers and a solution.

Male, 28 y/o, slim, non-smoker, non-drinker, plant-based diet.
In mid 2017 (26 y/o) I started suffering lumbar spine pain; I thought at the time presumably due to intense weightlifting, long distance running and not taking care of my body. It just worsened and I had two acute overnight attacks of radicular nerve pain down the back of my left leg. By Dec. 2017 I could not sit in a chair anymore and the nerve pain down the back of the left leg was becoming chronic. It went from the top of the glute all the way to the heel. MRI showed a single moderately diseased disc at L4/L5 but there was no neurocompression (no big bulge / herniation and no stenosis). All other spinal segments were free of disease. I continued to worsen. I started to get tingling on both of my thighs while walking. I met a new physio in Mar. 2018. He gave me new exercises to do. By this time standing and walking were getting a bit sore and my lumbar spine was starting to feel very fragile. I couldn't sit any more at all and sleeping was getting tough due to the burning down the back of the left leg.

These new exercises took the situation into explosive mode. I had a very massive and acute exacerbation of my symptoms. Suddenly the nerve pain was incredibly severe and relentless. It was present in both legs anteriorly and posteriorly, left worse than right. My sitting tolerance remained at zero but my standing and walking tolerance went to near zero as well. I was effectively bedbound. But even totally immobile I was in severe pain. There was so much neuropathic pain (very intense burning, prickling etc. sensations). Despite this, I had no neurological deficits (no weakness, reflex problems, muscle loss etc.) I had another MRI and it showed the same as last time: a degenerative disc at L4/L5 but no evidence of neurocompression and all other spinal segments were fine. So my pain was overwhelming and severe, yet the MRI picture didn't explain why.

By all accounts, my spine looked mostly fine. The lack of findings on MRI and the lack of neurological deficits took me into a period of time where it was very difficult to get taken seriously and to get a treatment plan. The doctors, I assume, thought I was being hysterical when describing the pain. My spine was actually tender to touch at the L4 / L5 level, my back 'burned' at this level and my neuropathic pain I subjectively felt radiated from there. It was hypothesised my diseased disc was causing chemical irritation of the nerve roots and also was the cause of the lumbar spine pain – although this would be a very rare presentation given the very banal MRI findings. I had two caudal epidural injections (Oct. / Dec. 2018) and they did not help. They increased lumbar spine pain a lot though for the first 2 – 3 weeks after having them. I had fasciculations in my left heel at night sometimes and it progressively worsened. I had a repeated MRI in Dec. 2018 and a high intensity zone was visualised on the L4 / L5 disc suggesting the presence of annular disruption (this was not confirmed with a discography). In Jan. 2019 I had an artificial disc replacement at L4 / L5 with an LP-ESP disc prosthesis. Actually this operation had positive effects on my lumbar spine pain. I had sitting and standing tolerance restored to mostly normal. So it seems like there was disc pathology involved somehow.

It was a minor victory though, as the operation failed to improve the neuropathic pain in any way. I continued to have severe bilateral neruopathic pain constantly throughout the day. I also started to have lots of stinging and strong bruning in my lumbar spine and these sensations increased with time. Time didn't appear to be imrpoving things and actually fasciculations appeared to be spreading and worsening. It seems that even if the disc was involved, my nerves had become diseased in an of themselves. Despite this, I remained without any neurological deficits. By May. 2019 I had grown totally and utterly despondent with the situation. Pain had destroyed me emotionally. I was begging my doctors to try figure out what the problem was. I must stress, the pain was and is very severe and it is constant. It is so difficult to focus during the day and to get to sleep at night. I am mostly homebound and I wear shorts, even though it's the winter, because fabric seems to worsen it a bit. Any amount of activity (as simple as a short walk) make pain noticeably worse for a few hours before return to base severe pain.

I had an EMG / NCS and this failed to show the presence of any lesions (I'm not sure how rigorous the procedure was) – it was 'unremarkable' for a few peripheral nerves in both legs. I then had a full battery of radiological and lab tests. These included CT lumbar spine scan (no contrast), full spine MRI, brain MRI, SIJ and Pelvis MRI,flexion / extension x-rays and the following bloods: FBC, Comp. Met. Profile, C3, C4, HLA-B27, CTD screen, ANCA, tTG, Rheum. Factor, CCP, CK, CRP, Urate, TSH, Free T4, Vit. D, Albumin, IgG, IgM, IgA, Electrophoresis, ACE, HIV 1+2, Hep B+C, Lyme disease, Ferritin, B12, Folate, HbA1c, PSA, Glucose. I was assessed by a rheumatologist, neurologist and neurosurgeon.

The neurosurgeon did not recommend any further surgical intervention. This makes sense to me as my prosthesis is functioning fine and there is no evidence of nerve entrapment and all other spine segments were free of disease. The rheumatologist said that my lab work and lack of symptoms don't suggest at a systemic illness, this I agree with too. The neurologist wasn't very clear on his opinion, he didn't give a diagnosis but since my EMG / NCS was clean, radiology was clean and my tests were seemingly all fine he referred me for chronic pain management. Of note: the SIJ MRI showed some oedema in the right SIJ joint and some osteophytes but this was considered not clinically significant or explanative of my symptoms of diffuse lumbosacral burning with lumboscral radicular pain which is worse in the left leg.

I had a transforaminal epidural injection and pulsed radiofrequency of the dorsal root ganglion bilaterally at L4 / L5 in late Sept. 2019 and this failed to help at all. It was a painful procedure as well. The next thing to try is apparently a spinal cord stimulator but I feel like this is not going to help.

So here I now am. In summary, I have severe bilateral asymmetric neuropathic pain and fasciculations in both legs as well as intense burning and stinging in my lumbar spine; these symptoms are constant throughout the day and worsen with activity. It does not appear to be improving much with time and in total it has been ~20 months since Mar. 2018 when things went from manageable to insane.

I basically can't fathom why I have such severe, chronic dermatomal pain without any evidence of anything wrong with me (clean imagery, electrophysiology exam, labs and no neurological deficits). Just applying Occam's razor I think something like the following may have happened: my disc tore badly and this prompted a rare non-systemic auto-immune response which affected surrounding tissues. In particular the PNS became chronically inflammed and there was widespread, multi-dermatomal radiculitis. The disc was not dissected for many months, so the nerves potentially maladapted to this. Now they had bad widespread damage, and are struggling to heal. Or else they have healed incompletely. The lesions were not big enough to be found on EMG / NCS yet are enough to cause severe pain (?).

Roughly, I think I could have had a trauma induced self-limiting form of non-diabetic lumbosacral radiculoplexus neuropathy. Or some other kind of non-systemic vasculitic process that is only causing pain and fasciculations.
I have not looked into this much, but I could perhaps also have a small fiber neuropathy?

I recently trialed high dosage corticosteroids (70 mg for 3 weeks, and this was pushed up to 100 mg for the past 4 days). There has been seemingly no improvements to pain or fasciculations from this. I have tried antiepileptic and antidepressant medications (gabapetin, amitriptyline, venlafaxine) and none helped at all, and mostly just messed with my mood and were hard to come off of. I would be very hesitant to keep trying different antiepileptic and antidepressant medications. I have been prescribed ketamine oral syrup 50 mg x 3 a day and it doesn't really seem to help to be honest.

I'm at a loss. I don't see a clear answer here. I have thought about having an MRN and asked my doctor about ordering it recently. Even if it verified abnormalities, I'm not sure what it would mean about a diagnosis, prognosis and treatment. I feel like my body is just fundamentally broken. 20 months is a long time to have spent 'healing' and to see very minimal improvements. 10 of those months my spine has been free of disease as well. Some people have enough damage to case weakness and axonal damage but they improve quite rapidly. I am perplexed.

Well, that's it really. Sorry about the length. I think it's just pain management and waiting to see if it spontaneously resolves.

EDIT: I'll just pre-emptively say that I've tried CBD in various ways, NSAIDs, various physical / physiotherapy protocols, mindfulness / relaxation stuff, therapy for pain depression and none of this stuff helps an iota unfotunately. I genuinely feel like I'm at the end of the road.

Jump to this post

@timsdeece I'm sorry for your situation and can related just to the frustration of not knowing what is wrong and having a thick costly pile of bills and results to still not be 100 percent certain. I can tell you that from my own experience that Lyme tests are very inaccurate and I've come to the conclusion that tests are just a tool but the symptoms are more telling then the test – usually. I had 4 tests, 2 were same type of specific Lyme test that gave me very different results. So, you could further pursue Lyme by finding a Functional Lyme literate MD but that is a project in itself due to it being pay out of pocket usually. Has anyone mentioned possible CPT disease that affects muscle pain made worse by exercise? Here is a link: https://ghr.nlm.nih.gov/condition/carnitine-palmitoyltransferase-ii-deficiency
Seems like your nerves are affected based on clothing sensitivity and nerve stuff seems so hard to figure out. I wish you better days of health ahead.

REPLY
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