Would I still be considered to have neuropathy, or something else?

If this is the case then you will be in my camp. Most neurologists will not say you have SFN. They will medically code it as a "disturbance of skin sensation", which is absurd, IMO.

Yup same camp! My neurologist corrected me when I used the term symptoms. He said they're sensations.

It may just not be "small-fiber neuropathy" as defined by the five and ninety-five percentile standards of the McArthur protocols (which in my opinion are rather arbitrary and limiting).

I've written a LOT about this in the past; just this morning I posted this:


http://neurotalk.psychcentral.com/thread230440-2.html

I should also add that the two general neurologists who did my physical exam found areas of temperature loss on my upper body. They said it was small fiber neuropathy.

Later, the neuromuscular doctor only did a punch biopsy test on 2 spots of my right leg. The punch biopsy test was analyzed in house at UW Teaching hopsital and did not look at my sweat glands. I did not have a QSART test either. My guess is that it would have confirmed SFN since parts of my body are not sweating properly.

The neuromuscular doctor emailed me with my results, told me they were negative for SFN, and told me to get a referral to the pain clinic.

Either way, positive or negative results, he would have told me to go to the pain clinic. At UW they are only interested in diagnosing it and sending you on your way.

This was my experience as well.

Such a quandary....we want explanations and hard evidence for our symptoms (not to mention substantiation for disabiliy insurance), but I was devastated by my positive results (received two months ago). I have both autonomic and sensory neuropathy and was hoping it was a one-shot deal (reaction to neurotoxic medication); I thought I would improve.....

Just last week my ophthalmologist said he saw damage in my eyes.....that was a surprise.

Now some autonomic symptoms are improving, but pain is worsening and affected areas areas are spreading......rapidly.

So what can I say?....I would have preferred a negative diagnosis...even though dysautonomia is tough to substantiate. (I don't have POTS).

I'm really struggling with all the issues attendant to having a chronic illness...

Well, on to the new year!

S

My advice is to find a doctor who will treat the symptoms.

You try a medication (usually one of the anti-seizure drugs) until 1) the discomfort is reduced and 2) you can tolerate the medication.

My brilliant Immunologist says: "We use the tests we HAVE, not the tests we NEED." The tests we have don't always tell the entire story, of course. WE know that all too well.

I know I have dysautonomia without POTS since I have Sjogren's symptoms which are the results of attacks on my autonomic nervous system.

Doctors simply don't know everything and good ones will be the first to agree.

Bad ones will send us away since they want 'round patient pegs' to slide easily into their 'round diagnosis and treatment holes'. After all the round patients walk away with a diagnosis and treatment in the allotted time. We 'different shaped patients' are just taking up lots of unreimbursed time!

And we are not all square pegs: we are star shaped, and triangles, and so many other shapes....which is why we don't have easy diagnosis and treatment.

We can't change the medical profession. We have to keep trying doctors until we find ones that will use some intuition and trust to help us find relief and validation.

Hugs, ElaineD