My neurologist office called me this morning to let me know that my skin biopsy was positive for small fiber neuropathy. They asked me to come to the office tomorrow for more specific blood work that they send to a specific lab called Athena.

I didn’t speak to the doctor, but the woman that called said that the small fiber neuropathy is responsible for the tingling, pain, numbness and dysautonomia (including gastroparesis). I asked the woman who called about the cause and she said that the doctor would talk to me about that when I come in for my appointment Feb. 15. They should also have the additional blood work at that time.

I wonder what additional tests they would need. Apparently I have to sign off for them. I already had a bunch a lab tests last week.

Mere

Sorry you have SFN, but you can join the club here! Bad news, good news?? At least you have a diagnosis of it now and can proceed from here. I was kind of relieved in a way to get the diagnosis. Shocked but relieved, if that makes sense.

Sounds like they are testing you for hereditary neuropathy. I think Kitt will give you more info. She is familiar with Athena testing.

Also sounds like your doc knows what he is doing!

Oh well, a bit shocked but once I became aware of the symptoms and what they meant, I kind of figured that it was apparent. I am relieved that I have a definite answer.

I went to the Athena site and it certainly does sound like genetic testing...that would explain the consent form.

I am indeed very fortunate to have found my doctor. All of these years that I have been ill and he is the first to put it all together... after a countless number of doctors and some at teaching hospitals. Now to see if he can find a cause. I am not going to get my hope too high.

Very happy to be a member here... Mere

Hi Mere, I hope you get the answers you need. Keep us posted.

Sounds like genetic testing to me too.

Keep us posted!

Thank you, I will know a bit more after Feb. 15 (my appointment). I think my neurologist is very thorough. He told me initially that he suspected SFN and that he would try his best to figure it out. That it may take some time, but he would figure it out...

I hope that to be true.

Mere

i just checked out that athena site, they sure have a lot of tests for hereditary PN. I had a panel done with them but that was to test for autoimmune markers.

Athena can only test for SOME of the genetic markers. There are so many.

I was told it was too expensive...lol. It ended up OK, since I ended up with autoimmune markers in my blood. One can have both though.

It can be very expensive if you have to do a whole panel of testing - at least for CMT. However, Athena does have a plan to help with the cost. Your insurance might also help.

As far as CMT, they can now test for 22 + types. But, just because they cannot come up with a type, it does not mean that you do not have CMT. It would just be a type that they cannot test for. There are 50 types identified so far and there is no end in sight.

I asked my doctors office if my insurance would pay for the cost of testing and they said "yes". And, that they are calling my insurance to get the authorization. I have no idea of what specific tests they are doing.

Well, I hope it is covered, I can't really afford it...

Mere.