Small-Fiber Polyneuropathy May Underlie Dysautonomia in ME/CFS

ChookityPop

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https://www.medscape.com/viewarticle/936745#vp_1

A significant proportion of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia may have potentially treatable underlying autoimmune-associated small-fiber polyneuropathy (aaSFPN), pilot data suggest.

They identified 61 patients as possibly having comorbid aaSFPN. Of those, 52% tested positive for at least 1 of 4 autoantibodies, including antimuscarinic cholinergic receptor 4 (47%), anti-beta-2 adrenergic (27%), antimuscarinic cholinergic 3 (25%), and anti-beta-1 adrenergic (13%). These autoantibodies were linked to ME/CFS in a recent Swedish cohort study.

"Disturbances of adrenergic and cholinergic receptors by these autoantibodies may contribute to symptoms of autonomic dysfunction in ME/CFS," Whelan said.

38% were confirmed to have small-fiber polyneuropathy on skin biopsy, and the vast majority of those patients (93%) had either POTS or OI.

Whelan notes that some data suggest that IVIG might help patients with small-fiber neuropathy, including those with autoimmunity.


In addition, he described anecdotal data from a single patient with ME/CFS who had neuropathic symptoms. The patient was treated at Simmaron. The 56-year-old received two IVIG infusions given 6 months apart. The patient experienced a dramatic reduction in levels of all four of the relevant autoantibodies and favorable symptom reduction, as shown in clinician follow-up records. "With the success of this case study, we intend to further evaluate IVIG as a potential treatment in ME/CFS patients. With this research, we hope to identify a subset of ME/CFS patients who will respond favorably to IVIG," Whelan concluded.

IVIG is not a cure for me cfs. But an increase in quality of life I would take every fucking day of the week.

This is interesting. My arms are burning as a m***** as Im typing.
 

ChookityPop

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I received a SFN diagnosis just now. I'm really depressed about it. I wonder if there are medications that can improve my quality of life.
Whelan notes that some data suggest that IVIG might help patients with small-fiber neuropathy, including those with autoimmunity.


In addition, he described anecdotal data from a single patient with ME/CFS who had neuropathic symptoms. The patient was treated at Simmaron. The 56-year-old received two IVIG infusions given 6 months apart. The patient experienced a dramatic reduction in levels of all four of the relevant autoantibodies and favorable symptom reduction, as shown in clinician follow-up records. "With the success of this case study, we intend to further evaluate IVIG as a potential treatment in ME/CFS patients. With this research, we hope to identify a subset of ME/CFS patients who will respond favorably to IVIG," Whelan concluded.
 

Learner1

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I received a SFN diagnosis just now. I'm really depressed about it. I wonder if there are medications that can improve my quality of life.
"How We Treat Autoimmune Small Fiber Polyneuropathy with Immunoglobulin Therapy - FullText - European Neurology 2018, Vol. 80, No. 5-6 - Karger Publishers" https://www.karger.com/Article/Fulltext/498858

I get IVIG and experience the dude effects listed. My doctor has prescribed a similar protocol with extra saline, premeds and a slower infusion speed. Benadryl is a bug help.

Rituximab and aoharesis/plasmapheresis are other treatments that may be helpful.

@ChookityPop I have some of the antibodies mentioned causing my dysautonomia, but do not have SFN/SFPN. Not everyone does. However, it is more likely to be prescribed IVIG with an SFN diagnosis than just the antibodies.
 

ChookityPop

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"
I have some of the antibodies mentioned causing my dysautonomia, but do not have SFN/SFPN. Not everyone does. However, it is more likely to be prescribed IVIG with an SFN diagnosis than just the antibodies.
Thanks for the info, thats good to know. Do you have nerve pain/neuropathy? Have you done a skin biopsy? I havent done it myself yet, but I have lots of nerve pain in my arms and legs that comes and goes..

I wonder if its possible that I could end up with a negative skin biopsy for SFN now and have it appear positive in the future. I HAVE to try IVIG. Its fucked up that it should be this hard to get it.
 

Learner1

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Thanks for the info, thats good to know. Do you have nerve pain/neuropathy? Have you done a skin biopsy? I havent done it myself yet, but I have lots of nerve pain in my arms and legs that comes and goes..

I wonder if its possible that I could end up with a negative skin biopsy for SFN now and have it appear positive in the future. I HAVE to try IVIG. Its fucked up that it should be this hard to get it.
Yes, I've had a biopsy. It was negative. I do not have pain, but I have had hyper POTS that's autoimmune.

I know a couple of people who have been prescribed IVIG for SFN.
 

sometexan84

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Yes, I've had a biopsy. It was negative. I do not have pain, but I have had hyper POTS that's autoimmune.

I know a couple of people who have been prescribed IVIG for SFN.
Where on your body was the biopsy? Was it in 1 or multiple places?
 

junkcrap50

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Yes, I've had a biopsy. It was negative. I do not have pain, but I have had hyper POTS that's autoimmune.
How did you know/confirm the POTS was autoimmune? Celltrende?

From what I've learned recently, a more thorough biopsy workup is more like 6 locations (foot/ankle, quad, wrist, upper arm, back/torso). But usually location with symptoms is all they do.