Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 My daughters neurologist(which specializes in peds nueromuscular disease) and geneticist want her to go to Detroit because her presentations of CMT in her are so unique or " interesting " as they so. Also while we were at the Genetic appt they found pigmentation changes that look like Mccune Albright Syndrome which is pretty rare. So what I thought was going to be about the genetics of CMT in my 4 yr old turned into finding another very interesting symptom. Samples have been sent to University of Miami's CMT research program. I have found alot of resources that will help for our flight from NC- Detroit but I can't look into those until the appt is scheduled. So has anyone been to the CMT clinic on here? I would like to here about your experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi , I went to Wayne State last June and found it to be very helpful. It was great to be somewhere where CMT is so well understood. I recieved a thorough neurological workup, genetic testing and counceling, saw a physiatrist and an orthotist. I was treated with respect and kindness. Written reports and recomendations were sent to me later. I highly recommend going there. Feel free to contact me if you have any questions. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hello Rosemary. I was wondering.does it cost you to go to Wayne State Clinic? Thanks Geoff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 Hi Geoff, We never received any bill from Wayne State so apparently they accepted whatever insurance paid. We did pay our travel expences and we paid to stay in guest housing right there. That was $40 a night for single room units. They also have one bedroom suits for $75 a night. They also sent me additional info about other area hotels and restaurants. If you are interested in making an appointment, call Rowe at (313) 577-1689. I did have the genetic testing done and so far no charge, but they did the test wrong so the gene duplication didn't show up and Wayne state is working on getting the lab to do it over at no cost to me so I don't what the cost might be for the original test . Hope that helps. Rosemary Quote Link to comment Share on other sites More sharing options...
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