Help With Requesting Small Fiber Nueropathy Biopsy

[diamondcut]

Can anyone offer any advice please.

I have had exstensive autonomic testing and GI testing over the last few years but i feel the more information you can gather on your body, the more chance you have of fixing yourself.

I would like some help by anyone in how i can word this to my POTs specialist and request a SFN test?

I believe i have small fiber nueropthy or a very high chance of this. I have type diabetes and suffer with Vulvadynia which is a nueropathic pain issue in itself. I feel that my migrianes and constant nausea and discomfort if to do with SFN as i have had every possible stomach and bowel test in the world which was normal so i do not have a mechanical problem.

I really think this is an issue to a lot of my daily symptoms, but very often i have the response from Dr's that, it doesnt matter whats the causing problems, its about treating the symptoms! This infuriates me and what makes things harder for me is because i react so badly to meds, taking Lyrica or something similiar is a big deal for me. So i want to be a sure as possible it would beneficial.

When up against Drs like this how have any of you had success in pushing for things like this. In the UK there is only one hospital that does this so i think i have to really push for this if i want it.

Thanks

[bellgirl]

Since you are in the UK, you may have more trouble with this, as health care is run differently, than in the states. But my doctors are pretty good about doing the things that I request. I requested an MRI/MRA , because of family history of aneurysm, and I've had a lot of blood work done that I requested, too. I am a nurse, so I know that helps with the doctors. Could you try Lyrica without the biopsy? A skin biopsy may have more of an adverse reaction and pain with dysautonomia, than trying a new med, possibly. Just asking...

[HopeSprings]

but i feel the more information you can gather on your body, the more chance you have of fixing yourself.

Totally agree. Do you think Diabetes is the underlying cause for your possible SFN? Have you looked at diabetic autonomic neuropathy?

[arizona girl]

Hi diamond. I have sfn and have had a sfn skin biopsy twice. It is a pretty easy, not very painful test. The shot to numb you is the worst part. It is a very tiny circle skin punch at the lower leg and upper outside thigh. Healed fine both times and can't even see it now. Make sure you take care of the wound until it heals.

If you google small fiber neuropathy, skin biopsy and Saperstein and levine, you will get a very good study about sfn and the skin biopsy, as they helped pioneer this test. I don't know how to insert the links, but their publications are easy to find through google.

You very well may have small fiber neuropathy which includes the autonomic nerves, and the most likely suspect in your case would be the diabetes. I'm not diabetic but I have hyperinsulinemia and several autoimmune diseases which may be the cause of mine.

You might google treatments for small fiber neuropathy. If you have large fiber nerve (the nerves that control your muscles) damage, you may have some kind of polyneuropathy which is approved for ivig, in the usa it is not yet approved for mono neuropathies. I do get it but that is because I also have cvid immune defect. With my current treatment plan much of my autonomic dysfunction has improved. I take synthroid, glumetza, plaquinel, ivig-privigen, and labetalol-(very little now).

You are wise to bring this information with you. "What about small fiber neuropathy?" to a neuro who had just told me my emg was normal, were the magic words that got me referred to my current neuro, who finally confirmed the diagnosis. I wish you well on this next phase of your journey, stay strong!

[diamondcut]

Thank you everyone for your help.

First of all, i didnt do well on a trial of Lyrica and really dont do too well on a lot of drugs, so the more sure i can be that i am on a drug or trialing a drug for the right reasons it will make my life easier, the reactions last for weeks when they are bad you see.

I have been type one Diabetic since i was 11, i have been told from the tests i have had that its unlikely to be autonomic nueropathy from the Diabetes and more the EDS causing my problems.

My POT's Dr came to this conclusion by having the autonomic testing of placing your hands in ice and they take a load of readings (not sure exalcly what they are gauging here) i also had a 24 manometry on my stomach that reads the muscle contractions and rythms your intestines should perform and mine was normal, so i would think this rules out Polynueropathy. But I am not convinced they can rule out SFN with the basic tilt table/stress test and more "normal" POTs testing.

Thank you for the Levine and Saperstein infromation i shall take look. I do feel not totally satified they can rule SFN out from what they have done and having the Diabetes for so long.