Autoimmunity may underlie newly discovered painful nerve-damage disorder

[Andy]

An analysis of the medical records of patients treated at Massachusetts General Hospital (MGH) for an often-mysterious condition involving damage to small nerve fibers supports the hypothesis that some cases are caused by autoimmune disease and also identifies the first effective treatment option. This report on 55 patients diagnosed with what appears to be autoimmune small-fiber polyneuropathy (SFPN) finds that treatment with intravenous immunoglobulin, used to treat other autoimmune and inflammatory conditions, provided symptom relief and improved nerve function for most patients, allowing some to discontinue treatment.

“This is a proof-of-concept finding that dampening the body’s immune system may be safe and effective for treating apparently autoimmune SFPN, a condition that most patients don’t even know they have,” says Anne Louise Oaklander, MD, PhD, director of the Nerve Unit in the MGH Department of Neurology and the senior author of a paper receiving advance online publication in Therapeutic Advances in Neurological Disorders. “This is the first treatment that has the potential to actually improve the nerve damage, not just block symptoms with drugs such as opioids that don’t address its cause.”

SFPN involves widespread damage to the tiny nerve fibers that carry pain signals and control internal functions such as heart rate, blood pressure and sweating. Patients often develop chronic pain, fatigue, weakness or fainting when standing, rapid heart rate or gastrointestinal problems. Common causes of SFPN include diabetes and chemotherapy-induced nerve damage, but this paper studied some of the 30 to 50 percent in whom no cause is found when they are first evaluated, leading to a diagnosis of “idiopathic” SFPN. Studies from Oaklander’s group and others have suggested that some such patients have a previously undiscovered autoimmune condition.

http://www.massgeneral.org/about/pressrelease.aspx?id=2172

 

[Hoopoe]

I wonder how many here have this. This could also explain a few things such as autonomic dysfunction.

 

[guest001]

http://www.massgeneral.org/about/pressrelease.aspx?id=2172

Very interesting. I have no idea if I would come within this diagnostic framework. My neuro is inclined (after MRI and peripheral nerve conduction tests) to think my body-wide neuro pain is more likely to be centrally mediated... which tbh I don't disagree with. But I suspect 'this' could be 'that'? It's good to know work into pain disorder etc is ongoing. I was staggered to find how hopeless the future seems for most people with chronic neurological pain conditions when I first developed mine 6 years ago.

 

[Skycloud]

@Lilpink Do you think your neurologist might be interested in discussing this research with you?
Though I imagine it's still early days for this treatment ..

 

[guest001]

@Lilpink Do you think your neurologist might be interested in discussing this research with you?
Though I imagine it's still early days for this treatment ..

I've emailed it to him. I'd imagine he's already picked it up being old school and on top of new stuff (which sounds somewhat contradictory but I'm sure you get what I mean?). My guess is he'll say it needs replication etc...but he might be QI.

 

[TrixieStix]

This is an article that I often see suggested in online support groups that is about Small Fiber Neuropathy. It's a good resource.

http://www.mdedge.com/ccjm/article/95083/diabetes/small-fiber-neuropathy-burning-problem

I was diagnosed with Small Fiber Neuropathy (SFN) in September by my neurologist after my skin punch biopsies came back VERY positive. I am 38 yrs old and given how bad my small fiber nerve density is now I fear for the future as it already causes me
serious constant pain requiring serious pain medication. It has affected my entire legs from my toes to my waist, my hands/arms, my face, and possibly my central nervous system as well. The SFN damage is so bad in my left leg that it's caused serious muscle weakness.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348533/

"studies have demonstrated that approximately 50 % of patients diagnosed with FM may have SFN contributing to their sensory and autonomic symptoms, indicating that the measurement of ENFD is an essential step in evaluating FM patients and excluding other treatable causes of their pain.

The skin punch biopsy is a simple, reliable, and definitive diagnostic test that is currently available for the measurement of ENFD for these patients.

The biopsy can be performed in any physician’s office and shipped at room temperature to one of the few specialized labs that performs this type of testing. The results give physicians an objective diagnostic tool to fulfill the diagnostic criteria for FM by excluding SFN as a cause of their patients’ pain and may allow for the detection of any underlying etiology and ultimately provide appropriate treatment and a possible cure for some of these SFN patients."

 

[oldtimer]

I read about the immunoglobulin study in the middle of last night as I sat with my feet in a bucket of cold water for relief from burning pain. Then, coincidentally, I found this thread shortly after. What a great website this is!!

For years I've been told I probably have ME/CFS/FM - by the few doctors who didn't immediately prescribe antidepressants It has never quite rung true because of the way the story started over 50 years ago when I was about 16. The wrong symptoms came first for ME/CFS, although I seem to fit the diagnosis now.

About 30 years ago my eyes were so dry they were starting to bother me and eventually a Schirmer test put me well within the criteria for Sjogren's Syndrome. At the time, I was just told I had dry eyes and to use drops as necessary.

Last year, my GP sent me to what's called a "physician" in Australia: someone who is supposed to look at the big picture and make sense of it. Despite no indication from the usual blood tests (not uncommon in SS), he tentatively diagnosed Sjogren's Syndrome and referred me for a scintigram, which would be proof enough. You suck on a lemon and the salivary response is measured. I didn't have the energy to go and I was managing my symptoms reasonably well so I cancelled the scintigraphy.

Also last year, I saw a neurosurgeon about possibly having steroid injections in my spine for osteoarthritis pain and I happened to mention my burning legs and feet that were keeping me awake at night. He dismissed it as coming from my back and said no more. Knowing my symptom patterns, it didn't make sense to me.

Now I discover that SFN is not uncommon in Sjogren's Syndrome. In Aus you can't just phone your specialist; you have to go through your GP, and only if they think it's not a waste of time. It's such a fine line to tread to not appear a hypochondriac and be dismissed. So I'm psyching up for my visit in mid March to hopefully persuade her that I should see a neurologist and have a biopsy. She has already prescribed Pregabalin for the pain. It was The Drug From Hell!