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Not getting any concrete answers
Im in horrific neuropathic pain but dont know exactly what is causing it nor do some of my doctors. We dont know if it is from a cervical problem at C 5-6 (DDD, spinal stenosis, and spondylosis) or multiple sclerosis. Other systems have been checked. Neurosurgeon says if my upper body parethesias get worse to consider a neck fusion. Ive had upper body sx's for a few years.(Conservative tx's were done)The neuromuscular doctor says I dont have MS but there is plenty of reason to consider it. 3 weeks after getting Covid this past Jan I started to get R foot numbness, and feeling of walking barefoot on a hot road and a couple toes being numb. It has advanced distal to proximal so now it is to my inner thighs, groin, R sit bone, basically pubic area. The upper body sx's extended to palms and fingers and at times up the neck to face. Awaiting a SFN test. It feels like Ive been sunburned after the area has been active with burning. I also have a lot of muscle twitching. In January brain MRI -without demyelination but in May showed 2 areas 1 and 2mm. Not enough cells in CSF to do a differential but everything in CSF neg. Had 2 weeks of 100% relief with cervical steroid inj but the second one didnt work. I welcome any thoughts
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I've had right ball of the foot numbness too. Prolonged walks or driving, wearing ill fitting shoes and lifting too much triggers my R foot pain. I've attributed it to a lower back problem from years of work that required lifting. Also a newer diagnose of osteoporosis, which may well be a underlying cause. I did experience some scalp numbness back in April and the doctor I saw recommended experimenting (with different thicknesses) taking a towel, rolling it up and sleeping with it around my neck. This did the trick overnight. He also recommended a symptom diary, but the towel roll eliminated my numbness. This doctor also suggested a trial of alpha lipoic acid 600 mg twice a day. Thankfully I now had no need to take this. I had read online that some Australian providers do not advise this medication with thyroid conditions, which I have. I have beefed up my calcium intake, careful exercise, and will soon be on a medication to treat osteoporosis.
Most people carry their stress in their neck/shoulder area according an Alexander instructor I saw. I definitely do, so have continued Alexander lessons & I find them a lifesaver, but everyone seems to gravitate towards a modality that suits them best.
ty for your response and the tips. Is the alpha lipoic acid suppose to help neuropathy?
A trial of alpha lipoic acid was recommended for my presenting scalp numbness. It proved to be more along the line of a pinched nerve. For the most part it had been one sided and would last only about 10 minutes upon awakening. I went back and re-read the doctor's note, his diagnosis was simply (scalp) numbness. "Suspecting some night time postural vascular or nerve compromise." He did not utilize the word neuropathy.
I was seen at a teaching hospital clinic so there better be some research out there that validates use if the stuff (As they teach their students at this center in California not to recommend anything that has not been validated to death, I've learned over the years).
@ralphysmom I had this experience too from your comment:
"Had 2 weeks of 100% relief with cervical steroid inj but the second one didn't work. I welcome any thoughts"
I had a cervical steroid injection done as a diagnostic. It took away all of the body pain I was having everywhere for 5 days from my cervical stenosis. Then slowly symptoms began to return. The surgeon at that time ignored those results and I don't think he understood them. He completely missed the funicular pain which causes this phenomenon of referred pain all over the body from spinal cord compression. I did have new pain from the injection that caused sharp pains in my hand that took a few months to go away. This is a clue, and the same one I had that lead me to conclude I had funicular pain, and it was scaring surgeons out of helping me. I was right because the ACDF decompression surgery fixed all of it and there is no diagnostic test for funicular pain.
This was the medical literature that was a turning point in my life.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I saw that you were seen at Mayo in 2018. That's a plus. It will be easier to get in for a spine evaluation if you wish to seek an opinion there. Dr. Jeremy Fogelson at Mayo Rochester understands funicular pain and this was the reason I came to Mayo. I also had some complicating symptoms from Thoracic Outlet syndrome that caused nerve compression in my neck and shoulder area in addition to having spinal cord compression. You don't have to see a lot of changes on an MRI for there to be myelopathy and to have symptoms from it. My MRI showed I was out of space around the spinal cord and did not show changes to the spinal cord itself, and I had lots of pain symptoms. You can send imaging in and ask Dr. Fogelson to review it. Mayo does not charge for reviewing records when you apply to be seen for a consult. You may also be able to get a referral from your provider at Mayo who saw you in 2018. If you wanted to request an appointment at any Mayo campus, this link will get you started.
http://mayocl.in/1mtmR63
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Here is my story:
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
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