Small fiber neuropathy?

you make no mention of a spinal MRI? If this hasn't been done, your docs are negligent. It sounds to me like your pattern of pain, paresthesia has been non-symmetrical, affecting different areas of the body at different times, coming and going, in the presence of "severe pain and spasms in the back." That at least suggests a spinal origin for much of the problem, though this might be called into question in the absence of any cervical or thoracic spinal degeneration to explain your shoulder, arm, hand neuropathies.

I had a blood biopsy and it showed damage to my sensory neuropathy panel. Test was done at Washington University and requested by my neurologist in Sydney. We don’t have that type of test available in Australia. Showed damage and then I started appropriate treatment to help repair nerves. My nerves weren’t cut but badly damaged by my immune system. My nerves have started to recover but it takes a while. Not sure about broken or cut nerves. I have a very clever and wonderful neurologist.

Have you had your B vitamin levels checked? In the process and found out my thiamine was low and folic acid and B6 are quite elevated. Apparently these vitamins have a lot to due with neuropathy symptoms.

Yes, mine is autoimmune. I tested 13 for RA but you have to test at or above 14. Really one point off.
They believe it’s RA. The doctor in Boston thinks lupus or sjogerns. I am not diabetic. My hypothyroidism started way after diagnosed with neuropathy.

Have you had your B vitamin levels checked? In the process and found out my thiamine was low and folic acid and B6 are quite elevated. Apparently these vitamins have a lot to due with neuropathy symptoms.

I've had nephropathy for a few years I was taking B12 sublingual 5,000mcg for years had numbness in feet gradually up to my hips. Then had my doctor test me for B vitamins and they were high both B6 and B12 so after getting a DNA test they said I lack the enzyme needed to process B vitamins after I started taking L-Folate the metabolically processed Folate that converts the B vitamins in the body and stopped taking the high dose of B12 I'm feeling better less numbness but still there but the skin peeling on my hands went away so that and other things were caused by B12 toxicity which has the same symptoms as low B12 which was why I was taking the B12 but I guess without the enzyme it won't process in the stomach go figure.

I've had nephropathy for a few years I was taking B12 sublingual 5,000mcg for years had numbness in feet gradually up to my hips. Then had my doctor test me for B vitamins and they were high both B6 and B12 so after getting a DNA test they said I lack the enzyme needed to process B vitamins after I started taking L-Folate the metabolically processed Folate that converts the B vitamins in the body and stopped taking the high dose of B12 I'm feeling better less numbness but still there but the skin peeling on my hands went away so that and other things were caused by B12 toxicity which has the same symptoms as low B12 which was why I was taking the B12 but I guess without the enzyme it won't process in the stomach go figure.

I was diagnosed finally with non systemic vascular neuropathy. I did put a reply up earlier today but not sure where it goes as I’m new to this chat. I have suffered so much in the past year so I joined to help other people who may be suffering possibly with the same problem as it very rare and difficult to diagnose and the pain without treatment is diabolical. my chronic pain stopped after 3 hrs on a ketamine drip in hospital. Amazing. Take care that they don’t give you too much. Needs to be well supervised. I also had steriod drips and an immune support drip in hospital. I used to take steroids, an immune suppressant (still do )as well as 300 mg of gabapentin which I didn’t like. No more gabapentin now for the past 4 months as no nerve pain.
I have drips of 2 drugs steriod and imiran every month. My immune system has stabilised and the inflammation has gone. As before I am taking 4 mg prednisone a day and Imuran an immune suppressant drug as well as vitamins … vitamin B12 an insolar tablet and Centrum Advance every day and have a B12 injection every month. My immune system has returned to a normal level. I’ll be off steroids soon and will remain on Imiran .. small dose every day till the end of year .. hopefully..I m not sure how long I will have monthly drips. I take a non addictive sleep helper called Dyvito.. a newish drug that seems to work well with no after effects. All tablets are prescribed by my specialist who presently is the only neurologist I know of who can treat my condition. None of the tablets I take now have had any bad effects. I did try cymbalta initially for leg tingles but stopped because of nausea. I was prescribed cannabis oil but I’m not sure if it helped. Very very expensive and needs doctors script to get it in my state NSW. Rolling pin is great for leg aches. I swim gently to strengthen my legs. My progress has been monitored by my neurologist in Sydney.. he is amazing and does research as well. I thought there would be many USA neurologists who could help you but as I said before it is an rare disorder and difficult to diagnose.. not sure why. To get a correct diagnosis my blood sample was sent to Texas as we are behind in small nerve testing methods in Australia presently.
We are fortunately in Australia as we have a vg Medicare system so when I’m in hospital as an inpatient I pay for very
Little. Specialists in their rooms cost a lot but if you have private health insurance you can claim which reduces the costs. Tablets are not too expensive and the monthly drips don’t cost me anything as I go in as an inpatient as with the MRI…I’m very very fortunate. Unsure about your system. I wish you all the best.I did take Palexia IR but only when pain was unbearable. Not now though. Pls let me know if you have any success.

I’m glad the doctor ordered the appropriate test to determine the cause of the problem before throwing more meds at the situation! Feel better.

I spoke with a doctor today about the Ketamine and he said it can cause negative recall of experiences. Was this your experience? He said it could act somewhat like LSD. Thank you!