Birdlady Posted April 18, 2012 Report Share Posted April 18, 2012 I have a new symptom that has sprung up ever since I got strep back in December which turned into post-streptoccocal reactive arthritis with erythema nodosum. It was 6 weeks of severe joint pain, swelling and being completely immobile, but funny thing about it, is that my POTS was nearly 95% better then. As the inflammation in my joints and the nodules on my legs got better, my POTS got worse...lolAnyway, I have noticed since the EN has cleared up when I am standing straight up without slouching, and putting all my pressure on my feet, that I get an unbearable itching and burning in my shins and tops of feet. I have to stop standing like that and scratch them. When I look down at them, they look like your typical blood pooling POTS feet. No rash or anything.I had a EMG and NVC done about a month ago because my rheumatologist was so sure I had neuropathy in my legs. He looked at them and said they did not look right. I have to assume it's probably blood pooling from POTS? It turned out my large nerves work perfectly. The tech said my tingling and falling asleep issues were likely circulatory, but now I'm wondering perhaps it is SFN? I didn't realize at the time, these two tests can't check for SFN.Part of me has always thought I had SFN. Is it worth the skin biopsy to get dx'd. What does a Dx of SFN really do for a person as far as treatment goes? At this point, it's just an annoying symptom, but I guess if it gets worse, I may have to talk to my rheumy again.Thanks for any input. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 18, 2012 Report Share Posted April 18, 2012 Having just gone through a several month ordeal on this very topic, I can share a few things. If you have the biopsy and it's positive, you can start looking for things that can cause SFN. Also, the pattern of denervation can point you in a direction of looking at specific diseases that might follow that pattern. I went through all that and came up empty. As far as treatment goes, I think the drugs for neuropathy pain include cymbalta and neurontin. I doubt you'd need skin biopsy proof to get those. I really wanted to know if my autonomic nerves specifically were affected, thinking if they were that maybe this would explain the POTS symptoms. The right lab can look at both autonomic and sensory nerves. I wasn't able to get this answer - long story. And here's the kicker - even if your biopsy is negative, it doesn't mean you don't have it. I had one sample show positive and another not and was told you basically have to hit the right spot to find it. There are very specific measurements the Dr. takes to hopefully hit that right spot. I think the biopsy can give valuable information, but it may not lead to further answers or better treatment. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted April 18, 2012 Author Report Share Posted April 18, 2012 Oh my it's never easy, is it? I have to laugh or I'll cry.Part of me is just getting soo sick of doctors, tests, appointments etc. It's like this... Do I really want to go through all of this and then to think a negative might not even be a negative? Talk about frustrating. I'm sorry to hear your tests didn't reveal anything new for you.For now I've had Sjogren's and SLE ruled out. These were checked by the rheumy because I have a positive speckled ANA, but the subsequent tests were all negative except for positive Histone. He wasn't sure exactly what was causing that, but something I had taken was "bothering my immune system". I hadn't taken anything, so I didn't know what to make of that. I see him in July, so maybe I can dig more into SFN. I'm sure I could get him to refer me to get tested.Lots to think about. Thank you! Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted April 18, 2012 Report Share Posted April 18, 2012 Oh, geeze, not to be stupid but, what is SFN? I'm sorry.Linda Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 19, 2012 Report Share Posted April 19, 2012 Oh, geeze, not to be stupid but, what is SFN? I'm sorry.Small Fiber Neuropathy Quote Link to comment Share on other sites More sharing options...
issie Posted April 19, 2012 Report Share Posted April 19, 2012 Dana,Have you tried alpha lipoic? Many people claim that it is really good for neuropathies. I do however, know you need to make sure you take B1 first and with any single B you have to take a complex with it. If you don't get your levels up before you start the alpha lipoic some people have reactions to it. Since, not thinking you'd want to take neurotin or cymbalta or topamax - the one thing that I've heard helps a whole lot is the alpha lipoic. I know Jangle started on it and he says it's giving him lots of energy - he says it's making a difference with his POTS.Issie Quote Link to comment Share on other sites More sharing options...
peregrine Posted April 21, 2012 Report Share Posted April 21, 2012 My doctor went with the "your QSART looks like you have denervation weirdness, let's do the tests but not bother with the biopsy" approach. Roughly, she thinks there's not much point in establishing a definitive dx of SFN as long as you rule out the potentially problematic causes (diabetes, HIV, Sjogren's, autoimmune autonomic ganglionopathy, B12 deficiency, amyloidosis were what I got tested for). Roughly, there are treatments for SFN, you can try them if it's problematic (sounds like it is in your case; they work on other stuff too, for example Cymbalta seems to help some folks in general), but you may not need the biopsy etc for you to try treating it. Does that make sense?(also, I am curious about your "it's probably just circulation" - that is what I was told about my arm! hmm. and my legs totally do that when I stand in the shower, but not when I sit. I almost want to scratch them bloody just to make the itching stop (not SI)) Quote Link to comment Share on other sites More sharing options...
Serbo Posted April 21, 2012 Report Share Posted April 21, 2012 Hi DanaJust wondered how SLE was ruled out in your case? I am on the search for my tingling, numb hands and legs, and SLE is something i want to rule out.I have had the butterfly rash that that people seem to get with it. wondered if there was any specific test your doc did for SLE?Thanks Quote Link to comment Share on other sites More sharing options...
Birdlady Posted April 23, 2012 Author Report Share Posted April 23, 2012 @ peregrineI never had a qsart test done, so I guess this would be a good first step. The good news is that they now do this at the hospital in my area!@SerboI'm not entirely sure. My rheumy did a ton of blood work and said everything was negative. I'd have to get my bloodwork out and check if you are interested. I don't have any symptoms of SLE or Sjogren's so I felt like it should have been negative if that makes any sense...lol If you have the butterfly rash, that definitely sounds suspect. I've never had anything like that ever. Quote Link to comment Share on other sites More sharing options...
Serbo Posted April 24, 2012 Report Share Posted April 24, 2012 Thanks, i think an ANA test would be needed and they can look @ that. I also have MCAD so the rash could well have been a reaction, not sure. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted April 25, 2012 Author Report Share Posted April 25, 2012 Well my ANA is 320 Speckled positive, but the subsequent tests were negative. I got my bloodwork out and this is what was tested. Everything was normal/negative except for anti-histone antibodies and CH50. I just had a strep infection, so my doc thinks it's likely related, but he is keeping an eye on things. I see him in July.CRPESRRAAnti-DS DNAC3 ComplementC4 ComplementCH50 (High)SM antibodyRNP antibodySS-A/RO AntibodySS-B/LA antibodyHistone Antibodies (High)Cyclic Citrullinated Peptide Antibody (CCP)Rheumatoid FactorI'm the healthiest sick person you will find, at least on paper...lol Thanks, i think an ANA test would be needed and they can look @ that. I also have MCAD so the rash could well have been a reaction, not sure. Quote Link to comment Share on other sites More sharing options...
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