IVIg Update - Finally a formal Diagnosis! autoimmune small fiber neuropathy
 

Hello All,

I just finished my third round of IVIg over 5 days. I have only gotten a severe headache and some body aches from the first treatment that lasted 24 hours, since then I have made adjustments by ensuring additional water intake after therapy and continued tylenol regimen. Other that that, I really have been lucky with the symptoms from the IVIg so far.

I certainly feel less run down and I have alot more energy that I had before.
The only real downer is it has not really helped that much with the neuropathy.
I have noticed that the weather REALLY affects my neuropathy.
I am sure the neuropathy came on slowly, so it will go slowly unless there is permanent damage to my Dorsal Root Ganglia. Not sure if that could occur with autoimmune small fiber neuropathy with autonomic symptoms, but I did test seropositive for a test of the nicotinic ganglionic acetylcholine receptor (alpha3-AChR) at .09 nmol/L (excerpt from PubMed - Of 58 patients with low antibody values (0.03-0.09 nmol/L), 54% had a nonautoimmune neurological disorder or no neurological disorder.)

I meet with the Neuro next week and I am assuming he will attempt to determine the efficacy of the IVIg. At this point, I feel that each therapy session of 5 days has been a building block on the last therapy session, although the neuropathy has not noticeably been touched.

I did experience relief with noritriptyline before I began IVIg last year, but the sides began to be too much for me. (Was going to lose my job)
I am wondering if I should try amitriptyline and see if it has less sides?
I really need to get active again, I am only able to walk about 1.5 miles per day. Maybe I should be happy with that, but finding it difficult to live with.
This time last year I was riding a mountain bike 10 miles on the weekends and working out 5 days a week. Obviously I was in a phase of remission for my neuropathy. I would settle for half of what I had last year...

What autoimmune problems do you have?

Also 5 days, nerves take years to heal :), so obviously continued treatment would be needed to see results.

Hello andybonse,

Yes, I know it takes years for nerves to heal, but since I tested so low on the titer on a paraneoplastic panel test, the Neuro thought that I could have a positive response to the IVIg therapy and it cause the neuropathy to go into remission. I experienced strong levels of remission last year.

For autoimmune, I have psoriasis, some inflammatory issue and the autoimmune small fiber neuropathy.

N1