Small Fiber (Poly)Neuropathy (3 article/research links)

[MTRJ75]

With the following two postings on facebook by Dysautonomia International, this is now the 2nd and 3rd time I've read about SFN or SFPN in dysautonomia (POTS/CFS/ME/FIBRO): 

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Interesting Medscape article reviewing some recent ME/CFS research that found small fiber neuropathy and autoimmune markers in a subset of ME/CFS patients. 93% of the patients who had small fiber neuropathy had POTS or orthostatic intolerance.

If you have trouble viewing the article, you can sign up for a free Medscape account.

 

https://www.medscape.com/viewarticle/936745?fbclid=IwAR3PETPUVVZ0Hjkv4q_suABAxTLnJ_nBIsVGuKdBbe_YORUkIhOZ7af2s5o

 

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#FridayFacts The Big POTS Survey found that a majority of POTS patients experience burning, numbness and/or tingling of the extremities, suggestive of a sensory small fiber neuropathy.

https://onlinelibrary.wiley.com/doi/10.1111/joim.12895?fbclid=IwAR082UW6HJ3Lyx-yy75jg61-Pmv_9AFaSuYPNsWmYABTdpZfiGWZBfiJVB4

Along with this one from HealthRising last month: 

https://www.healthrising.org/blog/2020/07/08/fibromyalgia-chronic-fatigue-syndrome-small-fiber-polyneuropathy/

So if SF(P)N is the/a problem, what's the answer? One article suggests IVIG, but fat chance I'm getting insurance to pay for something like that at this point. 

[p8d]

Thank you for posting these. I am not on Facebook which is sooooo good for my mental health but I miss seeing this type of research. I was diagnosed with SFN when I was diagnosed with dysautonomia. I also have autoimmune disease so this all ties in very well. It also explains why SCIG is helping some aspects for me. It’s nice to see the research making progress. Thanks again.

[MTRJ75]

What testing had to be done for SFN? Is that a biopsy? 

And what is SCIG? 

I have sero-negative AI issues (Sjogren's), so it's more difficult for me to get treatment when doctors/ins company are skeptical due to lacking positive bloodwork. 

[TCP]

Very interesting. I developed neuropathic pain all over 13 years ago as the dysautonomia and POTS progressed. 

[Guest KiminOrlando]

4 hours ago, MTRJ75 said:

And what is SCIG?

Subcutaneous Immunoglobulin 

[MTRJ75]

Thanks Kim. I hadn't heard of that treatment before, but it's apparently been around quite a long time. Seems to be very similar to IVIG, but differs mainly in method of delivery. Doesn't sound like it's necessarily more cost effective though. 

[p8d]

@MTRJ75Yes, I was diagnosed with a biopsy along with an EMG to rule out large nerve fiber problems. I opted for for SCIG because of a history of migraines and was afraid of IVIG. Plus I can do SC at home. It is expensive but it is covered by Medicare (I am disabled) and I have prescription coverage through my husband’s insurance. I also have autoimmune disease (UCTD) and had positive results on the Celltrend panel (company is in Germany) which apparently helped convince the insurance to cover it. I believe that the companies that make it offer discounts if you have insurance coverage. Keep getting tested for AI disease, especially if it’s flaring. I was tested for it for 20 years about every 5 years and 3 times in 18 months after developing full blown dys before one random one came up positive. Treating that has helped me the most along with exercise but I couldn’t exercise until the severe fatigue let up just enough to exercise. It still took days to recover from exercise but all of the little things help.