Biopsy Results Back

[HopeSprings]

I can't believe it. It's positive. My Doctor didn't call, but I spoke to a resident? who said the results are "suggestive of" Small Fiber Neuropathy. I think that means it was positive. He said based on these results they can diagnose SFN. Is this Dr. speak for you pretty much have it? I think I am so shocked after sooooooooooo many negative tests to actually have something come back positive. SO is this it??? Is this why I have POTS??? I was lucky enough that someone canceled so I'll get to see him next week to follow up - otherwise his next available wasn't until November - I think my head would explode if I had to wait that long! I have so many questions. He sent me for a bunch of blood work for different things that can cause SFN - they were all negative. I hope he has more up his sleeve? Talk to me - tell me anything you know about this. I'm excited to maybe have an answer, but worried it may just lead to another dead end.

[juliegee]

Naomi-

Glad you're getting some answers. Very frustrating to receive them so off-handedly w/o the information you so desperately need.

I could be wrong, BUT I thought small fiber neuropathy was the RESULT of long term autonomic dysfunction. In other words, it's a chicken or egg thing, I think conventional wisdom says the POTS came first. When my son was 12- he was told he had a neuropathy of his small bowel SECONDARY to his autonomic dysfunction.

I strongly suspect that I have SFN too, but I've never had the testing. My symptoms are very intermittent, but my hands and feet are VERY impacted by vasoconstriction. My worse symptom is burning pain on the bottom of my feet. At times, it is unbearable. Pardon my curiosity, but what were your symptoms and what test did you have?

Sorry you are adding a new DX. please share all you learn with us.

Julie

[sue1234]

Julie, that's kind of what I was thinking. I kind of look at SFN as a consequence of whatever is causing POTS. It's like it co-exists with the issue. But, I haven't studied alot into SFN, as that is not a problem I deal with.

[HopeSprings]

My understanding is small fiber neuropathy can include autonomic nerves (autonomic neuropathy). If autonomic nerves are damaged or malfunctioning? we can end up with the autonomic symptoms we experience ->POTS. Question is what is causing (or has caused) damage to these nerve fibers. There are multiple things that can cause this damage - a few things he tested for were Diabetes, Celiac, paraneoplastic disease, B6 deficiency and a bunch of other stuff I've never heard of. He wants to test for amyloidosis, but insurance didn't cover the particular test (looking for a way around this). What prompted this was I put "burning feet" into Google and came up with the article below. I have horrible burning feet, painful legs and weakness in my arms and legs. I then checked with Dinet people who said SFN can cause POTS. Turned out my original POTS Dr. specializes in neuropathy, so I brought this idea to him. He said the best method to look for SFN is skin biopsy - he did it that day. I don't want to end up in the "idiopathic" neuropathy category, but probably will. In the meantime I'd like to be checked for as many things that can cause SFN in the hopes of stumbling across something that might unravel this mystery! I posted excerpts and link to the article below.

WHAT IS SMALL FIBER NEUROPATHY?

Small fiber neuropathy is a disorder of the peripheral nerves that primarily or exclusively affects small somatic fibers, autonomic fibers, or both, resulting in sensory changes and autonomic dysfunction when both types are involved.

Autonomic symptoms

When autonomic fibers are affected, patients may experience dry eyes, dry mouth, orthostatic dizziness, constipation, bladder incontinence, sexual dysfunction, trouble sweating, or red or white skin discoloration.2 Examination may show orthostatic hypotension and skin changes. The skin over the affected area may appear atrophic, dry, shiny, discolored, or mildly edematous as the result of sudomotor and vasomotor abnormalities.

http://www.ccjm.org/content/76/5/297.full

[sue1234]

Funny, those are the same things I've had checked!

Diabetes-negative

Celiac-biopsy negative, antibody positive

Vitamin B6-above normal range

Amyloidosis-negative

Paraneoplastic-negative

It seems like we keep coming back to the darn blood sugar issue.

I have a question, kind of rhetorical. I know that diabetics are notorious for having SFN. That is almost a given for a long-time diabetic. Yet, I don't see a connection with long-time diabetics and POTS. Maybe I haven't noticed? You'd think that they would have a high propensity for it. I wonder if the SFN is different in some capacity than other known SFN patients? Maybe glucose causes theirs in a different manner than x causes POTS. Just need to find out what the x factor is!

[nunntrio]

Wow, thats great. I can not even imagine how it must feel to know what is causing your POTS. Who did the biosopy (if you don't mind me askint)? Have you had a sweat test as well? My sweat test was Neg. so I did not pursue SFN any further. I have been told however that a bio. is more accurate (not sure if that is true). Very happy for you. I can only imagine how great this must feel.

[HopeSprings]

Nunntrio - the biopsy was done by a neurologist at Columbia in NYC. I think he did do the QSART test in 2007 (don't know if this is the sweat test?)- results said: Sudomotor Testing- sympathetic skin response normal in both hands and feet. So that test didn't pick it up. If you're suspicious you might have SFN, maybe ask about a skin biopsy.

Sue- great point, why don't more neuropathy people have POTS.

[Sallysblooms]

Ask your doctor about Alpha Lipoic Acid. The right amount is very, very good for the nerves. Good for many things. Has helped me so much. It is used for a lot of reasons, but for any neuropahthy.

[nunntrio]

I have a question, kind of rhetorical. I know that diabetics are notorious for having SFN. That is almost a given for a long-time diabetic. Yet, I don't see a connection with long-time diabetics and POTS. Maybe I haven't noticed? You'd think that they would have a high propensity for it. I wonder if the SFN is different in some capacity than other known SFN patients? Maybe glucose causes theirs in a different manner than x causes POTS. Just need to find out what the x factor is!

Good point my Dad has fairly bad neurophathy that has to be treated with pain meds yet he does not have POTS. I know there is a Dr. near me that studies neuropathy in diabetics and also has does some autonomic testing with it. I went to him but he was not interested in helping me because I was not diabetic.