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@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.

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Replies to "Hi I just joined this forum and I thought I'd share my story. I'll summarise as..."

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 @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.

@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.

@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

@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.

So sorry to hear this story because my spouse has been on a similar path. But we found something that helps us. Maybe it will help you. This is our experience.
My spouse was badly hurt in a hit and run. Three surgeries and they still had bone on bone back pain. Walking, sitting and even lying down brought pain. They were sent to multiple doctors, compiling test results and enduring therapies and meds including ketamine for depression. Many treatments seemed to worsen pain and decrease restful sleep. They tried CBD with no impact. Opioid and sleep meds made things worse because they developed dangerous sleep apnea. This went on for over nine years. We both became more anxious and depressed.
Last year, after marijuana was legalized in our area, and at the urging of a disabled friend, they finally tried smoking and then vaping the THC derivative of marijuana. We had little expectation of help because of their CBD experience. But THC is different and finding the right version for them did help. Their inflammation and pain decreased from the first day. Sleep apnea greatly improved within weeks so a CPAP is not needed now. The pain is bearable most of every day. They have withdrawn from all pain and sleep meds.
Now our concern is about the effects of smoking and vaping, especially on the lungs and cognition. We are looking into tinctures because edibles didn't work well. But bottom line is that today is the best they have felt in nearly a decade and it is easier to exercise and make healthier food choices.
Don't give up looking for what will help you.

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