Early this spring my neurologist said I had Small Fiber Neuropathy. I have Celiac Disease. She thought it was caused by the Celiac Disease. This summer, I found out I have Predominant Humoral Immune Deficiency (I have Selective IgA Deficiency and IgG2 and IgG3 subclass deficiencies). My immunologist said that my neurologist needs to confirm her diagnosis of Small Fiber Neuropathy with biopsies. I brought this up last week when I met with my neurologist again. Instead of ordering biopsies my neurologist changed her mind -saying that rather than my having Small Fiber Neuropathy she thinks I have an autoimmune related neuropathy. She said that if I had Small Fiber Neuropathy it would not flare up and down as it does, that I would have a constant burning, for example. She said she would not want to put me through biopsies as the damage would probably not show up as my symptoms come and go.
I think she was right when she diagnosed me with Small Fiber Neuropathy. I did a lot of reading about it after she first diagnosed me and it seemed to fit my symptoms perfectly and it is linked to Celiac Disease very strongly. I suspect that she just does not want to put me through the biopsies to confirm Small Fiber Neuropathy.
She wants me to start IVIG treatments. I am still convinced that the neuropathy (whatever type it is) is caused by the Celiac Disease because it almost goes into remission about a month out from being glutened (I keep getting cross-contaminated despite my best efforts at a gluten-free diet). If it is caused by Celiac Disease the IVIG treatments would not be effective. I declined. I think I just need to do better on the gluten-free diet.
Anyway, are the symptoms of Small Fiber Neuropathy constant or do they flare? She told me that the burning would be continuous - not flare up and down as mine does. As I experience the symptoms, a spot can burn for two weeks straight and then stop. Sometimes it can just be a few minutes that I experience the burning. I also get stabbing pains, trembling, twitching, vibrating feelings, numbness, pins and needles, and so on. The burning pains are the worst of the lot. From my feet to my face, it seems no area is left out. The burning is largely in my legs and hands. The stabbing pains can be anywhere. My face and feet and hands have the numbness.
She also now thinks I also have pinched nerves.
Thank you for your response.