I read up on the Wayne State program, and am aware of the Athena Labs.

I do know my issues are axonal, at least that is what my nerve biopsy indicates, so it seems like I would fall into CMT 2, but, I don't know...I look at CMT 1 and at times feel like I fit more in that category.

I had spinals for 3 C-sections...the general didn't work on my first one! I had uterine atony...water broke but no labor....then they induced and after 12 hours, no progression...back then when you had one section, any more were done as sections. I also had horrible dysmenorrhea as a young woman and no real pathology. One daughter has it but now we know NSAIDS work, so she has those. I had RLS as a kid, and one daughter, my sister and one cousin do too. My dad and his 3 brothers and dad all died between ages 43-68, and one family of 3 brothers, all second cousins died between 40-50 from sudden cardiacs. Something is going on in one branch of the family tree. I haven't been in touch with many cousins, and hereditary disease is not a topic that my extended family seems to want to approach. I do know one cousin had a child with hip dysplasia, which is occurs with CMT.

I can't take any SSRIs, any antidopimergics, any anticholinergics...it has been hideous trying to knock me out or sedate me. I had a uterine ablation in 2003, and they used a general, before I knew I had neuropathy, and I felt so bad, I went back and told them I thought I had a stroke....I swear I never recovered after that procedure! I had a total bottom out of my blood pressure and heart rate post op and they had to use meds to speed up my heart and raise my blood pressure...this was as they were walking me out of day surgery after I told them I was sick! They had more people in there it was almost a code. I wish medical professionals (and I am one) would listen when people say, 'I'm sick---don't take out that IV'. Boy, I never saw so many white faced nurses after 5 tries and still no IV back in...after I told them...don't pull it....leave me here...I am too sick to go home! BP was 70/40 and pulse was 40.

A year later I had PN diagnosed. It was diagnosed as sensory and autonomic...I just had a muscle biopsy that indictes myopathy as well...so it must also be motor, in my way of thinking? So if it is a CMT it encompasses all three kinds. It seems that autonomic forms of CMT are only recently being recognized. They may have always been there. Who knows. I know some groups of Scandinavians have higher rates of CMT and I am prehistorically northcentral Swedish on one branch.

Medication has been a huge issue for me.

I did tell my docs about Athena labs and the Wayne State program...I go to a research center which has done just about every test available except the genetic ones.....they are looking at how best to deal with the gene issues now. I have to pay some money towards my orthotics and when this is taken care of, then I can take on the share I will likely pay for Athena Labs. I guess the most you pay is 20% out of pocket if insurance won't cover? There is no need to repeat all the testing, biopsies, EMG etc, but Wayne State could use my info. I have a well document genealogy and a large cohort here that if it is an identified CMT, it would be of interest to them. Plus we are in the midwest, not far away.

I would like to know what I have, so my kids know before they have kids. A few of them are not reliably employed with stable insurance, and until every one is employed, I am not pushing them to get the diagnosis...one has definte symptoms similar to mine but far less severe, and the other has scoliosis among other neuro issues. A third one has neuro issues too, and some odd ones, like I have. One seems unaffected, at this time, but she crawled on the back of her wrists as a baby! Not on the palms, but the back of her wrists. I had her evaled for CP, never thinking it was CMT. She is in her mid 20's now and seemingly very healthy.

Thanks for the info and the support. Also it seems to me, that CMT is actually hereditary PN and visa versa....there seem to be several diagnoses for the same disease??

I am taking a general vitamin and sublingual B-12. I usually take calcium but my dog ate my viactiv! He is OK (dumb dog eats anything and survives). I suppose I should take magnesium as right now, I can't eat leafy greens. I am having esophageal issues which could be related to PN or a totally separate problem. My Vit. D level is normal.