• Anonymous
      March 13, 2007 at 2:20 pm

      Hello Family,
      The doctor called me today and told me that the specialized bloodwork results showed NEGATIVE for CMT (charcot marie tooth syndrome), BUT, he still thinks I have CMT. He said there are rarer forms of CMT that can show negative. He said we’ll discuss it at my next appointment in two months.

      I was given a very positive confirmed diagnosis of CIDP in 1998, never any doubts, I was strongly told “YOU HAVE CIDP”, and, to me, that means I have CIDP and possibly a second chronic syndrome, CMT.

      I’d like to know what my family here thinks, for those who don’t know me, just read CODYSTANLEY’S CIDP STORY, jfitzen did the typing for me and posted it for me.

      Do you think I should go ahead and join a CMT forum, because I don’t think I’m going to get a definate confirmed diagnosis.

    • Anonymous
      March 13, 2007 at 3:51 pm

      Liz, I might think you should get a 2nd opinion. Remember this is a new neurologists for you, has he read everything in your file? I would always think a 2nd opinion conferes things. I didn’t do anything on Abby till I got 2nd opinion.

    • Anonymous
      March 14, 2007 at 2:11 am

      I second that reference to getting a 2nd opinion. The league of dipsh*ts at a very large LA hospital(not public) said I had GBS and CMT. For 14 years I didn’t seek any treatment because I thought I had CMT. I had GBS in 1991 and didnt find out I had CIDP and not CMT until 2005.
      I only went to the doctor to try to get some kind of help with being able to walk since the foot drop got so bad. But I also noticed my calves were beginning to atrophy as well- not a CMT feature.

      From my understanding your EMGs should show the type of axonal damage and with hereditary based neuropathies the way damage occurs is noticeably different than from MS or CIDP etc.

      Neuros thinking we have CMT is one of the oldest wrong diagnoses around from what I’ve read.

      I don’t know what aspect of your symptoms is making your doc think you have CMT too but remember that the damage from CMT is irreversible and based on genetic abnormality. So if you ever had one of those symptoms go away after a relapse passsed it also cannot be CMT.

    • March 15, 2007 at 12:36 pm

      Hi Liz,
      We also were given an initial dose of CMT for my son. I am sure you read about all of the other typical symptoms ie. hammertoes, drop foot, also, are there any other family members w/drop foot? As I mentioned last time I wrote to you, there is this wonderful lady in California that helped me when I thought my son had CMT and she said she would be happy to talk with you. Also, Muscular Dystrophy can give you tons of info as they did me (they helped to confirm that we did not have cmt and should quickly seek another neuro for correct dx.) Also, MD will help you pay any bills that you have if your insurance does not pay. I did join a CMT forum and talked with many people. I think that while you are seeking another opinion, other cmt people might be able to help you. Good luck and let me know if you would like that ladies number.