[judiesva]

If anyone could help me with my Dr I would greatly appreciate it. I have a diagnosis of "neuropthy" for the past 4 years. The first Dr (a large HMO) thought I had CMT even though I had neg results from genetic testing. Several other Dr's within the HMO said no, they don't think I do. After attending several CMT meetings, I felt it was really necessary to try and get a more definitive answer. My HMO had me see their Neuo Chief. His opinion was no CMT. My problem is I cannot get him to give me a reason for his diagnosis. I have been point blank "yes/no is your basis on the neg genetic testing?" Nothing, all I get is "my opinion is it is not CMT." I do know there is no "cure" for CMT. I also know that the treatments are the same really no matter what the cause (or at least currently-I think i my life lifetime depending on what type of neuropathy treatment will be different). I have asked for a referral to Johns Hopkins STAR center for CMT, and he has said no.I am willing to spend out of pocket for Hopkins, but I would like to know from my Dr. the reason why he thinks it's not CMT. If there are very good reasons I would probably choose NOT to spend my own $ at getting the same diagnosis from Hopkins. Any advice?

Thanks-

Judie