Myotonia Congenita Forum
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Hi Jan,
I'm finally getting some help. I got to see the doctor at MDA that took an interest in my case a few months ago. She hadn't been there the last two times I went and I thought she was gone for good. Anyway she spent at least 45 minutes to an hour questioning me about eve4rything that has been happening. She is testing for the neuromyotonia and has also agreed to try and get my insurance to pay for the dna testing I need. She actually saw the weakness, un-coordination, and stiffness I've been trying to get the other doctor to take seriously. She gave me a prescription for baclofen and already I can see it making a difference in my stiffness and soreness. I've postponed my visit to the new neurologist my gp refered me to long enough to let the test results have time to get back. I've looked and read a lot about Isaac's lately and I too think this is more where I fit in. Since all these new symptoms have popped up for me, reading over some of the symptoms described by others diagnosed with Isaac's is almost like something I've written about myself. Just for curiosity sake, do you know how rare this is in the USA? I haven't found any statistics in my research. Thank you for being there for me. You've been more help and support than you will ever know. I'm sure I'm not the only person that thinks this way. I'll let you know what I find out ASAP. Thanks again.
Teresa
Type of Myotonia: still unknown
Country: USA
