Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 I had an appointment with National Institute of Health on Monday under their rare neuromuscular disease study. This appointment was unlike any other doctors appt. They were so kind, compassionate, friendly,understanding, spent hours with me and were truly interested in me as a patient. It was by far the most remarkable medical experience I have had to date. Contrary to my last doctors appointment, they do indeed believe I have CMT and most likely a recessive axonal type (never knew the difference before) based on the EMG and muscle biopsy study taken 20 years ago! They took 3 seperate blood samples and will run 3 seperate genetic tests to try to determine type. (would never have gotten that approved through insurance!) I will have results in 6 weeks. In the meantime, they are setting up an appt with their rehab department so I can discuss the various types of bracing that would benefit me and hopefully recommended exercises. Hopefully, by having a direct connection now in NIH, I can learn more of what they are studying and be able to forward information learned. Jackie Quote Link to comment Share on other sites More sharing options...
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