Doctor advice - no referral
 

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

What are your symptoms? You may have posted before. Does anyone in your family have any symptoms?

Even though you may have tested no for CMT with DNA blood testing that does not mean that you do not have CMT. It could be a type that they do not have testing for as of yet. Hope you find the answer.