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Goschi

Can Eds Cause Sfn...?

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I do have small fiber neuropathy, confirmed by two skin biopsies. Unfortunately it seems to be progredient.

Up to now, no cause was found. After numerous tests, it seems as if nothing autoimmune goes on in my body.

Yesterday, I was at a geneticist. She told my I may have EDS. She did lots of tests and draw blood for the genetic test. Now I have to wait...

I forgot to ask her - is it possible that EDS causes the small fiber neuropathy?

Anyone here got both? In that case there should be a possible connection, I guess.

It would be more than a jackpot having those two rather rare diseases completely unrelated... (?)

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Yes, my daughter had a skin biopsy to confirm small fiber neuropathy and has also been diagnosed with EDS.

Hm, that's interesting Christyd. And did the docs make a connection between the two diagnosis?

Hope, your daughter is doing well!!

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Goschi,

I just want to make sure you know that there are several types of EDS and the genetic testing is only available for 2 types. The tests will diagnose vascular EDS in about 95% of patients that have it and classical EDS in about 50% of patients that have it. The most common form of EDS is hypermobile type (HEDS) and there is no genetic test for it....it is a clinical diagnosis. I just want to make sure you know that you may still have EDS even if the genetic testing doesn't show anything and the geneticist should still cknduct a thorough clinical evaluation for all types of EDS.

I don't know for sure if EDS is considered a cause of SFN but many EDS patients have it. If you are interested in finding more info on EDS or want to ask an EDS forum about SFN, www.ednf.org has great resource info and a very active forum called Inspire. You can also find the diagnostic criteria for each type of EDS at this site.

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Thanks, Katybug!

I definitely don't have hypermobile EDS, that's clear after yesterday's appointment.

The doc just told me lots of signs on my body could stand for several EDS types and she just wants to see whether the genetic testing can add more pieces to the puzzle.

(btw., she mentioned that her department recently saw a growing number of EDS patients, whose main symptoms seem to be myopathic).

I have already started to read on ednf.org, but people there are not sure about a connection between EDS and SFN. (Thanks for the URL)

As a first step, I just wanted to see how many of us in this forum have both conditions.

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I have the EDS, dysautonomia, SFN combo too. It seems like there is beginning to be some good evidence for SFN in EDS, but more research is needed. Here are a few studies addressing this.

http://www.ncbi.nlm.nih.gov/pubmed/24507822

CONCLUSION from above: Dysautonomia consisting of cardiovascular and sudomotor dysfunction is present in EDS-HT. Neuropathy, connective tissue laxity, and vasoactive medication probably play a role in its development.

http://www.ncbi.nlm.nih.gov/pubmed/24968706

From above: By contrast, the correlation of the GHQ (r = 0.298) and PDQ (r = 0.413) with the ASP supports the hypothesis that joint hypermobility and neuropathy may play a role in the development of autonomic symptoms.

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Naomi, thanks a lot for the links!!

The possible combo between EDS and SFN seem to be a rather new finding.

And among our forum members here, not so many seem to have both...

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Hi Goschi, I have EDS, POTs and probable SFN also. I say probable as we don't have access to skin biopsies in the UK but I've been told that my pain, stinging and vasomotor symptoms are due to problems with the 'small nerves'.

I often wonder which comes first - is SFN the root of POTS, due to damage/dysfunction of the small nerves and are EDS people more prone to SFN for some reason?

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Hi barb10,

pain, stinging and all the vasomotor symptoms can of course be signs of small fiber neuropathy - but I don't think it is necesseraly so.

POTS itsself can create all these problems, as far as I understood, even without any structural nerve damage being present.

And yes, I always wonder what comes/came first... I will ask my geneticist if she personally has made experiences with patients having both EDS and SFN.

Best wishes to you!!

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