Aussie I jsut PM'd you, but I figured I should post this anyway.

I did an extremely detailed genealogy of my family and got a lead. The condition I am looking at is rare and very specific to a certain country and due to their, well, how should I say it....umm, homogenous population and restricted travel and 'roots' they have managed a 'founder effect' of this one disease. I am not posting it here, as it is extremely rare and I don't want to say much until I get the chromosome tested. PN is part of this myopathy and may be the cause, along with improper vasoconstriction and vasodilation. As well, as thermal insensitivity. There are several 'founder effect' diseases.

However...I suggest that all of you check out the myopathy section of neuro.wustl under hereditary myopathies, or just in general.

Some myopathies are linked to neuropathy. You get to thinking most myopathy is muscular dystrophy, but it isn't. Greg Lemond the famous Tour de France winner has a mitochondrial myopathy.

Myopathies often are helped by some Co-Q...it is a banned substance for proathletes. Not because it is bad, but if you take a lot, it improves muscle function....it is an enhancer for pro athletes and large amounts are not allowed.....my daughter won't even take a vitamin. She has to take urine tests some times after races....and the kid won't touch a medication, not for a cold, or even after she crashed and was severely injured...refused painkillers...I told her she was nuts, as she wasn't going to bike for quite a while! But she is stubborn so no arguing with her.

If you are getting really good results from Co-Q, research the hereditary myopathies and pay very close attention to your genealogy. My neuro told me genealogy was extremely important on one of my first few visits to him...it took me this long to really pursure it past grandma and grandpa. I am glad I did, and I happened upon a condition...It may be wrong on the disease, but then again I may be right.

I have a big concern regarding the diagnosis of fibromyalgia, which simply means, fibrous tissue, and myalgia, which means muscle pain. That fibro.org site is a Pfizer site. Please pursue your fibro diagnosis beyond that initial medical sounding title. It is kind of like telling you that you have a headache and calling it 'cephalgia', so you think it is a real disease. It is medical double speak. If you have 'fibromyalgia', something is wrong, you may have a significant disease they did not test you for, as you have to get past 'gatekeeper' tests. Too many people are being labeled with that and being sold psychiatric meds for pain.

By the way, there are hundreds of hereditary sensory or motor neuropathy/myopathies. You can't just go to a doc, and say test me. You have to present a case for a specific chromosome mutation.