Yay Another Diagnosis To Add To The List...

[hholmes13]

So I followed up with my neurologist again today after a bunch of fun tests to determine the cause of all my burning pain/numbness tingling and weirdness that has been occurring. Turns out my quanitative sensory test showed decreased sensation of cold and a hypersensitive reaction to heat/pain. I got the answer that I expected..."idiopathic" small fiber neuropathy. I seriously hate the word idiopathic. Anyway, he knows I'm pretty sensitive to meds and doesn't want to bog me down with more pills so we're going to try a topical cream of lidocaine/ketamine/amitriptyline to see if it takes the pain away at all. I've also been having some weird visual things and terrible headaches so he also thinks I'm having lots of migraines.

I'm really hoping he's right even if the cause of the neuropathy is unknown. I was seriously starting to worry I was developing something scary like multiple sclerosis. As far as he can tell my CNS doesn't seem to be involved. (Yay!) I'm curious if sfn is common in EDS...any other EDSers have it as well?

[alijames]

HI

What is EDS-- Ehlers Danos? I have had small fiber neuropathy for nearly 20 yrs, also have

cerebellar ataxia and dysautnomia. The neuropathy is common with dysautonomia.

I've put up with the burning nastiness for ages. Gets worse at night, usually. I'm having very weird

visual changes. The person who helped me most with that is a neuro-opthamologist. It's

both a sensory processing problem from sensory nerve glitches plus trouble with visual focus

shifts. Mine is now a terrible problem but took many years to get this bad.

I hate to say that with small fiber neuropathy, it's mostly a wait and see thing. HA!

No one ever gave me anything for pain! You're lucky to have a cream to try-

alijames

[ramakentesh]

Small fiber neuropathy is seen in about half the cases of pots. Idiopathic is the term but autoimmunity and cytokines are being investigated.

[ramakentesh]

I'm currently rubbing a mixture of water and tumeric on the location of suspected sfn.

[Chaos]

I'm currently rubbing a mixture of water and tumeric on the location of suspected sfn.

Should be making you very colorful.

[ramakentesh]

Its a crazy idea I had. Lol.

[hholmes13]

alijames - yeah EDS is Ehlers-Danlos. I have the hypermobility form (previously type III). It's interesting how so many of these conditions occur together. What is odd to me is the neuropathy is starting 2 years after I got POTS. Is that normal? Although I don't know if any of us could be considered normal anyway...

rama- That's a really interesting idea! Is it working for you? I'm not noticing much with the cream yet...but I'm nervous about putting too much on. It says on the warning label that if I apply too much I can hallucinate from the ketamine! I am wondering how much is too much...either way that wouldn't be good for me while at work.

[Natops]

I’ve been clinically diagnosed with POTS and SFN. I am desperately looking for some relief from the SFN. Have any of you tried Amitriptyline? Any success from it?

[ramakentesh]

Sfn is weird. Some docs think it suggest neuropathic pots, one told me he thought it was caused by pots not the other way around but the accepted views seems to be that it suggests autonomic neuropathy.

[hholmes13]

Natops, the topical cream I'm using has amitryptiline in it...but isn't helping yet. It has been over a week and I'm starting to think it's not going to make a difference. Not sure what the actual medication would do. I've heard that it works for some people though.

rama - I've been trying to figure out where my sfn is coming from. I had a thermoregulatory sweat test 2 years ago (My neurologist is actually the doctor that designed and created that fun...he's got an engineering degree as well. So those of you who hated it have him to thank!) and it was pretty normal aside from one patch on my lower right leg. He didn't think that showed neuropathy. Both times I had a QSART done (last time about 1 year ago) the results were normal. He is thinking of repeating those tests and seeing if there has been any change.