RichGotsPots Posted March 12, 2013 Report Share Posted March 12, 2013 http://chronicfatigue.about.com/b/2010/10/11/small-fiber-neuropathy-in-fibromyalgia-chronic-fatigue-syndrome.htmMany of you veteran dysautonomia people will have read and heard about the cross-over btwn dysautonomia, fibro and cfs. Well this article points to almost half of just the fibro and cfs group as having tested positve for small fiber neuropathy. "Researchers took skin biopsies from 30 people with fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, or a combination of these illnesses, as well as from a control group. Of the people with painful conditions, 13 (43%) had evidence of small fiber neuropathy."Interesting short read.. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 12, 2013 Report Share Posted March 12, 2013 I have concluded that auto inflammatory autonomic neuropathy may explain a number of symptoms: 1. Adies pupil; 2. Worsening symptoms with storm; 3. Strange pots reactions to stressors; 4. Waxing and waning presentation; 5. Fluctuating course; an ancient finding of abnormal sodium channels in CFS. fibro, CFS and oi could all be differing manifestations of neuropathy dependent on the types of fiber or axons damaged. immuno suppression would improve via steroids or ivig. Ldn, plasmathingie, etc Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 12, 2013 Report Share Posted March 12, 2013 May even explain CFS benefit of rituximab. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 12, 2013 Report Share Posted March 12, 2013 I had no idea about this. I kept wondering how the SFN fit in - another piece to the puzzle. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 12, 2013 Report Share Posted March 12, 2013 I think it is the puzzle piece that might explain it. Quote Link to comment Share on other sites More sharing options...
issie Posted March 12, 2013 Report Share Posted March 12, 2013 If one is not sensitve to sulfa --alpha lipoic acid is one of the most recommended things for neuropathy pains ---according to most alternative health books. My father's doctor just took him off gabapentin and put him on this instead. Less side effects and doesn't cause as much depression issues.I have neuropathy in my feet - but leg biopsy didn't pick it up. But, when stuck with needles didn't feel it on my feet. With my new diet and the GastroCrom ---things are so much better. I'm starting to feel my feet and toes again. Things are reversing themselves and my POTS symptoms are better too. I think diet and MCAS meds working on autoimmune issues is what is making the difference.Issie Quote Link to comment Share on other sites More sharing options...
westernmass Posted March 12, 2013 Report Share Posted March 12, 2013 I did feel needles when stuck in my feet, but in my notes from the autonomic testing center it says: "sudomotor reflex absent in lower extremities"- what does that mean? Does that indicate neuropathy?I have pain/tingling in my fingers- boyfriend says its from being on phone so much (true...) but is that common? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 17, 2013 Author Report Share Posted March 17, 2013 Tingling could be a big sign for small fiber neuropathy. Issie, you said leg skin biopsy, which part of the leg did they take the skin from. The skin biopsy is about 88% sensitive my doc says it can only miss things if taken in the wrong spot (because they dont have an average baseline in every area of the body to measure against) or if the neuropathy isn't as bad at the moment. I have heard of the neuropathy healing some what from natural means so that might explain the flip flop in our symptoms. We might be healing temporarily and then something come along to slowly kill the nerves again.. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 17, 2013 Author Report Share Posted March 17, 2013 Also there is over lap btwn large fiber and small fiber but its not that obvious and most ppl dont have both.. Quote Link to comment Share on other sites More sharing options...
issie Posted March 17, 2013 Report Share Posted March 17, 2013 I had two biopsies one above my ankle and one on my thigh. But, this leg isn't the one that I have as many issues with. I thought for sure they'd use the leg that has the most problems. But, they didn't. And my neuropathies wax and wane. I'm not sure what is helping me at the moment --but, the feeling is coming back into my feet. Something is working. On so many things for the immune system at the moment ---so maybe the combination is helping.Issie Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 17, 2013 Report Share Posted March 17, 2013 I still wonder what is causing the neuropathy though? Wonder if that's where the virus angle comes in for those of us that got sick after an acute infection of some type? The specialist I saw says they are finding the viruses "living" in the nerves so maybe that's the cause of the neuropathy?I've had a skin biopsy that was normal but have failed 2 Qsart tests. My understanding was that the Qsart test, along with valsalva etc tests more for autonomic function whereas the skin biopsy is more for SFN..which is more sensory related? While they overlap, they are also distinct, I believe. At the time that I had the skin biopsy I had intermittent sensory changes but wasn't having them when I had the test done. Now I have paresthesias most of the time so I wonder if I had the skin biopsy done now if I would get a different result. Quote Link to comment Share on other sites More sharing options...
issie Posted March 17, 2013 Report Share Posted March 17, 2013 Chaos,If it is a virus, bacteria, protozoa etc ---it seems that it would still point back to the immune system. The immune system isn't dectecting and taking care of the problem. So, I lean more that way. If we can get the immune system to start recognizing the pathogens then maybe the body will take care of itself. Of course, I think we will have to do LOTS of things to get this to start happening.I agree --I think the neuropathy is the result of the problems ---not THE problem.Issie Quote Link to comment Share on other sites More sharing options...
Anoj Posted March 17, 2013 Report Share Posted March 17, 2013 i don't understand neuropathy or what should be done to treat it. all that i have seen addresses the symptoms and not what can actually repair.when i get up in the morning, my arch feels tight when i take my first steps. is that neuropathy? Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 17, 2013 Report Share Posted March 17, 2013 .when i get up in the morning, my arch feels tight when i take my first steps. is that neuropathy?That could be plantar fascitis- as that is a very common presentation for that condition.As for treating neuropathy, traditionally there hasn't been much available. Gabapentin (neurontin) is one treatment that is being used by MDs. Alpha Lipoic Acid is one supplement that has double blinded randomized controlled studies showing it is effective for treating it also. Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 17, 2013 Report Share Posted March 17, 2013 Chaos,If it is a virus, bacteria, protozoa etc ---it seems that it would still point back to the immune system. The immune system isn't dectecting and taking care of the problem. So, I lean more that way. If we can get the immune system to start recognizing the pathogens then maybe the body will take care of itself. Of course, I think we will have to do LOTS of things to get this to start happening.I agree --I think the neuropathy is the result of the problems ---not THE problem.IssieAgreed. You're probably right that the immune system is the underlying problem which would allow the pathogen to invade the nerves, causing the neuropathy which leads to the ANS dysfunction/symptoms that we experience. Fascinating research being done by the CFS researchers/immunologists now on all this stuff and they seem to be seeing how much the ANS dysfunction is showing up in their arena so hopefully they all start getting on the same page soon!!! Quote Link to comment Share on other sites More sharing options...
issie Posted March 18, 2013 Report Share Posted March 18, 2013 Fascinating research being done by the CFS researchers/immunologists now on all this stuff and they seem to be seeing how much the ANS dysfunction is showing up in their arena so hopefully they all start getting on the same page soon!!!Yes, I'm pretty jazzed about some things I read today on that. Seems like there are big ideas out there and seems like they are getting closer. I think there is such a close connection between ME/CFS and POTS and if you find the solution to one --you may also have the solution to the other. Good things happening.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 18, 2013 Report Share Posted March 18, 2013 I don't know if this was posted already.http://www.ncbi.nlm.nih.gov/pubmed/23474848 Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 20, 2013 Author Report Share Posted March 20, 2013 To date one of the most effective and studied treatments of small fiber neuropathy, no matter what the cause, is IVIG treatment. Meds like Gabaprentin are used to manage symptoms of pain but not as a healing treatment like IVIG is. There are a few others that have had success but they mostly vary depending on the cause. IVIG seems to work across the board. Knowing the cause helps physicians better decide how much IVIG to start with. condition like CIDP require IVIG every 2 weeks, while most other condition start off every 3-4 weeks.. From all the research I've read about it, so far, the key is finding a baseline to measure the treatment against. My Neuro is going to use valsalva and thermo testing and test me after every 3 months of treatment. I know of some ppl who get skin biopies every 6 months for a baseline. I've also read that once you are on an IVIG med that agrees with your body (not all are created equal there are many brands and variations within brands) then there should be some decent improvement by the 3rd month already.. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 20, 2013 Report Share Posted March 20, 2013 Are you going to be getting IVIG Rich? Were they able to find your underlying cause? Quote Link to comment Share on other sites More sharing options...
Guest mattgreen Posted March 21, 2013 Report Share Posted March 21, 2013 Rich, can you share any studies you have regarding IVIG and SFN. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 21, 2013 Report Share Posted March 21, 2013 http://pediatrics.aappublications.org/content/early/2013/03/06/peds.2012-2597.abstract Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 21, 2013 Author Report Share Posted March 21, 2013 Are you going to be getting IVIG Rich? Were they able to find your underlying cause? Yes! I suspect I have autoimmune or sarcoidosis which is also an immune mediated dysfunction.. Both are treated with IVIG. The trick is getting insurance to cover it.. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 21, 2013 Author Report Share Posted March 21, 2013 Rich, can you share any studies you have regarding IVIG and SFN. Matt really the list would be endless. First google causes of small fiber neuropathy. Then pick a cause and google IVIG treatment and the name of the illness. Here is a general study pointing to the benefits http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554132/ Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 21, 2013 Report Share Posted March 21, 2013 Rich - could you please post or PM me with info about what Doctor in NJ is willing to try IVIG? Hope you get it worked out with insurance! Quote Link to comment Share on other sites More sharing options...
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