Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Hey, Well I read the posts about Dr. Shy and now I am excited: A DOCTOR WHO KNOWS ALL ABOUT CMT! I can't wait until Jan. 24th to find out what will happen. Oughta be cool to talk to someone like that! ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Hi Ed, Thank you for your reply regarding Dr. Shy. I look forward to your article. Can you simply tell me if you think it would be worth the trip even though I have already had the DNA test confirming CMT1A? At this point my symptoms are pretty much numbness and weakness with some mild discomfort and stiffness in my right hand and sometimes in my toes. I don't have foot drop and other than the weakness I have no problems walking. The trip to Detroit will be time off work for me and my husband and making childcare arrangements. My husband has been through so much with me the last 6 months and I don't want him to feel like we've wasted our time. I know there isn't a cure but I do have alot of questions that I can't seem to get straight answers to. Any comments will be appreciated. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Hello Patty, I really can not advise you with out knowing you. There is an 83 year old friend (we're both widowers) that does rely on me for helping with medical decisions and I have his durable power of attorney. I can tell you what I was looking for and what I felt that was forthcoming. Expertise - All of the people that dealt with me were obviously well practiced and knowledgeable of the effects of CMT and accepted the fact that I have been confirmed with HNPP. They had no difficulty accepting my physical problems as rising from HNPP. One issue surfaced with Dr. Shy which was a very adamant focus on the periphial nerves exclusively. PMP means Periphial Myelin Protein! I do not agree with that but chose not to argue about it. Clinical Investigation Participation - They are doing investigative work and took some special samples from me for that work. I feel as though I have participated in advanced work. Follow Up - They had a Physiatrist do a functional evaluation and he prescribed new AFO's for both sides, that were considerably more complex, where I previously had one only on the left side. There were several problems with the making of these AFO's by -Filippis right there at the hospital. In the end, the commuting from NH to Detroit cost as much as the AFO's. That's about all I think I should mention at this point. My write up will be a chronology with these and other comments. Good Luck, EdM from NH > > Hi Ed, > > Thank you for your reply regarding Dr. Shy. I look forward to > your article. Can you simply tell me if you think it would be worth > the trip even though I have already had the DNA test confirming CMT1A? Quote Link to comment Share on other sites More sharing options...
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