Undiagnosed, numbness, tingling, Muscle weakness and more

@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/

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.

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

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.

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.

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?

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.

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.