Undiagnosed neuropathy and weakness

How frustrating for you. Have you been to Mayo? Also did this all happen after Covid vaccine? Mine did...I have total lower. body neuropathy with vibrations down my legs. Two major Medical School University evals (Columbia and Medical Univ of So Carolina. ALways the same diagnosis...ideopathic..not diabetic, or due to alcohol or chemo. I believe definitely related to vacinne. My treatment is zero..gabapentin does nothing. This is so debilitating and the progression is frightening. Oh, by the way, I have small axon...If I had the other type( CIDP), I could get the newly approved med Hytrullo (made by Vvygart). Keep searching...maybe an older neurologist who won't give up on your situation.

Thank you! I have not been tested for small axonal. Gabapentin and Baclofen do seem to help with the painful spasms and burning in the feet and legs. Yes, I have had all of the Covid shots but not willing to go there yet, lol. But I would definitely like to check out SFN. I have had EMGs, but not sure they catch small fiber neuropathy. Thanks so much again!

Hello. I have had an EMG but not skin biopsies for small fiber neuropathy. It seems like I may have SNF. If people could weigh in with their thoughts I would appreciate it. My symptoms are:

1) weakness in the legs from the waist down. Have to rely on wheelchair.
2) pins and needles plus burning sensation mainly in left foot, plus left arm and hand
3) spasms of legs. Spasms and burning seem to be helped by gabapentin (1800i and baclofen (40)
4) bladder retention, must now use a Supra pubic catheter
5) constipation
6) in February suddenly lost use of left arm- now about 75% back.
I have read that SFN doesn’t cause weakness. MRIs have all come back negative but LP did show inflammation. Thanks!

Just loss of use.

I have been diagnosed with Peripheral Neuropathy. I have lost strength in both legs to the point that my wife has to push me around in a transport chair. I can walk very short distances with a walker. But if my knees buckle down I go because my lower legs are too weak to keep me from falling. I’ve had anMRI and X-ray of my back, anEMG, and a MyloegramCT scan. I do some PT and I have an Ellipse machine that I’m on daily. Has anyone had this condition and if so were you ever able to walk again?

My father-in-law cannot walk or transfer himself to wheelchair. He is 91 yo.

Hello @davidcrich10, I combined your discussion on small fiber neuropathy with your previous discussion titled:

"Undiagnosed neuropathy and weakness"
- https://connect.mayoclinic.org/discussion/undiagnosed-neuropathy-and-weakness/

Here you met @rlipper and @rjack6618.

I have never been near any COVID vaccines but ended up with neuropathy--may be due to some medicine I took for sinus or perhaps due to the infection itself. A salesman at my local appliance store has idiopathic neuropathy--he had long COVID plus took vaccines for it. He has severe balance issues and tried immunoglobulin therapy but to no avail. Perhaps you can add some vitamins to your regimen as well as doing physical therapy. And, yes, not all neurologists are the same so we must keep on the lookout for the sage ones!

Thanks for taking the time to reply. Such a mysterious and dreadful condition. I am taking EB-N6, a prescribed vitamin B formula that was developed for diabetic neuropathy. It insures the correct dosages of Vit B 6 and 12. Prescribed by my podiatrist who sees a lot of neuropathy in his practice. I take no other B formulas or anything containing B. I also take HMB+D3...for muscle/bone. That's it. Oh one more at night. Magnesium Glycinate to help with severe foot cramping. I stopped two meds; atorvastatin and hydroxychloroquine...at the advice of a really great neurologist I saw at Columbia University, NY. I feel more stable now..of course you never get back feeling. I only have sensory loss; no motor and is mostly in my lower legs and feet. Before, I just felt a constant progression upward. Getting another EMG at Columbia in August. We all need to keep each other informed and keep advocating for research and treatment. If you have CDIP (large axon...neuropathy which I don't have, there is a new very effective treatment; Hytrullo by Vygart. There are very specific criteria for this diagnosis which I don't meet but it is also much more debilitating than our kind. Stay in touch.

Thank you! Yes I take a lot of B-12 and D