Neurologist visit today...
 

Hi,
So after my 2 month wait, I finely got to see the doctor. He asked a lot of questions, told him about my linage of PN relatives, that got his attention.
The next step is a nerve conduction test, but have to wait again until July 23!
He is suspecting small fiber neuropathy, he noticed that I have hair loss on my legs where the nerve damage pattern.
Started me on Lyrica. Only taking 75mg twice a day... That stuff is pricey! To bad they won't approve the Generic, Pfizer is making a killing with this stuff...
It IS all about the money.
I am wondering if there is a interaction with Zolpidem?

He suspects SFN, but orders a test (nerve conduction study) that cannot even check for SFN??? A skin biopsy is the only test that can look at small fiber nerves.

The drugs.com drugchecker shows a moderate interaction between Lyrica and Zolpidem...for increased dizziness, drowsiness, and difficulty concentrating.

Well, he wanted to do the nerve conduction test first, as my father had large fiber neuropathy, he said that if the nerve conduction didn't show abnormality, that he would next do the skin biopsy. I guess it will b the end of summer before he gets done with the tests... Does this make sense? You would think with my family history of neuropathy, (both sides of the family, brother, nephew, grandfather) I would be a "shoe in" for CMT! In the end, it probably doesn't matter what the cause, because after almost 30 years, it is likely to be here to stay, and none of the PN types have a cure... Would I want to be able to say I have CMT 1A rather then small fiber neuropathy? I guess it would be nice to know if the numbness is going to keep progressing like my father had, or will it just be sensory painful neuropathy like my mother...
The Lyrica causes so much drowsiness, I can probably do without the Zolpidem, took it last night, I was pretty fuzzy this morning.

This make perfect sense now. And with your family history, he should check large fibers, just in case.

In most cases the 'cause' only gives us piece of mind that we know what it is...it doesn't change the outcome. But in some cases, the treatment may change, so always good (I think) to explore some of the causes.

All depending on how long you have been taking the zolpidem, you may experience some withdrawal symptoms if you just stop taking it.

The first time when I went to a doctor for burning pain, he thought I was making it up, they didn't have much in the way of testing 30 years go. He ended up giving me a prescription multi vitamin, that of course, did nothing. The testing has come a long way, with DNA blood tests, nerve conduction studies, but wish they would find a cure, this disease is getting old.
I have stopped zolpidem before, I just started taking it again about 3 weeks ago. The withdrawal for me, is mostly insomnia. I have taken it off and on for about 3 years. No sleep eating or sleep driving yet! (that I know of...)

Just curious if the doctor/neurologist you are seeing knows CMT. If in fact you do have CMT, there is no cure/treatment for any of the types of CMT. They are doing lots of research but so far nothing.

I don't think he knows much about CMT, when I gave him the list of family members, his eyes kind of glassed over. I did mention CMT, but since I have exceptional balance, even with the high arches, toes starting to curl, and calf cramps, he is kind of reluctant to Dx me for CMT...
He was the best I could do locally, he is experienced in nerve conduction studies and skin biopsies for SFN, so that is something. There are no doctors in San Diego that are experts in CMT, I would probably have to go to Los Angeles, the city I loath.
The way I see it, I am resigned to the fact that after 30 years of suffering from this, there is no cure, I am not planning to have any kids because I am a monk, so the Dx will be mainly to see if I can find out about the severity and possible progression, and get meds to cope with the pain.
Does this make sense? Is there any justification for spending the money for the DNA test? BTW, I am a cash patient, as we are not insured, but I gt all my medical paid for. If it is a couple of thousand for the test, probably not much help for me. the nerve conduction was estimated at $1,300, and who know how much the skin biopsy will run.

I do hope that you find the answer.