Hi Mere, You could ask your doctor's office what specific tests they are asking for. It does sound like whatever tests they are going to have done will be covered. That would be good regardless.

Yes, I will ask tomorrow when I go in for the testing. I certainly cannot understand the insurance companies not covering necessary testing... How rude of them saying it is too expensive cyclelops.

I will find out tomorrow. Thank you for all the information guys. I feel a bit calmer about 'things' now...

Meredith

Oh, this doc exhausted all possibilities by then....he said it was autoimmune from the getgo, and I didn't believe him. I do now, lol. As I said, people can have more than one thing, so you never know.

I hope you get answers.

I would definitely say AI for one, perhaps there are additional reasons but your ANA is very high. Mine has never been that high. I am sort of borderline at 1:120.

--along with some testing from Specialty Labs of Van Nuys, CA--and not only do they do a lot of herediatry/genetic testing, they also can do testing for some of the more obscure causes of small-fiber neuropathy. My amyloid testing, for instance, was done through them (and, given your autonomic symptoms, this is definitely one possibility I though of). I also had specialized Epstein Barr titres done through them to measure antibody levels to specific antigens, the pattern of which can often point to certain obscure cancers (fortunately, didn't have any of those).

Do let us know exactly what tests are ordered--get a complete list, even if only abbreviations--we can figure 'em out.

If your insurance pays the tab, I would definitely get the testing!

On my ANA, it was negative for so darn long, then it went sky high...no in between. My diagnosis has been all over the map, over the 10 years it has taken. Seems like the lip biopsy 10 years ago was the best predictor of my issue....altho, it doesn't definitively identify the disease....just autoimmunity. Just because a lip biopsy is +, it doesn't mean for sure it is Sjogren's. Lately every one with Sicca, says they have SjS.

If your ANA is negative, I would definitely look at the hereditary angle....makes consumate sense to me. I am impressed your doc thought along these lines. Keep in mind, that even a negative test for hereditary neuropathy, does not rule out that issue. As Kitt said, there are many gene 'mutations'. Also, that new mutations are added every few months. It is an evolving field.

I do so hope you get answers.

I went to my neurologist today to sign the consent form for testing through Athena Labs. Fortunately, I was able to see my doctor briefly and he said he is testing for additional AI and "inflammatory" markers, and also amyloidosis (hereditary and non-hereditary).

I received a copy of my skin biopsy test and it reads 3.70 (normal is 5.7 for calf). It states "skin with significantly reduced epidermal nerve fiber density, consistent with small fiber neuropathy". The thigh reading was normal which is good I suppose.

Amyloid testing was normal on the skin biopsy - guess he just wants to be sure.

Mere

Hey Mere,
Well at least you know now. It is always kind of a shock.

Mine was 2 fibers, and that was 6 years ago....I bet I have zilch now, if that is even possible.

The joys of this condition.

Oh my goodness, Cyclelops... I thought mine was bad. I am sorry.

I feel like an empty oil drum, lol....you can holler down my mouth and hear an echo, where stuff used to be. ugh...not a good analogy.

I'm fine, really.