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Re: Facebook???

Colin - If your neurologist "never said", then he either doesn't know, or isn't that interested. You have a right to know. Do you have relatives with MC, or are you the only one? Are you sure it's MC and not a related condition? Jan is phenomenal at helping people figure out if they need to consider other possibilities - but even if it is MC, you may want to know if it's the dominant or recessive type. I had a neurologist who was also kind of cavalier about it. I never went back to him. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Re: Facebook???

Hey lois,

I'm an army brat, so when I was growing up my parents took me to military hospital instillations so I've never seen the same neurologist twice. Of all the neurologists I've seen 2 were good. The 1st one was an Air Force colonel who actually diagnosed me, at 8yrs old, with an EMG test. The 2nd one was an Army major who first introduced me to mexilitine when I was 16.
My last visit to a neurologist was 10 years ago. It was implied in that visit that I was as good as I was going to get so there was no need to keep coming back for follow ups. Out of all the doctors I've seen none have ever differintiated between the different types of MC and have always reffered to my condition as MC.

By the way, I am the only one in my family who has it.

Medicine in the military is socialized, so all my doctor visits, while living with my mom and dad, where free. The down side to this though, is that I've never had a primary doctor and I've never seen the same neurologist twice. Whether socialized medicine is better or not, is up for debate, but I'm just now learning that there’s a lot more to my condition than my doctors' led me to believe and that there's a lot of folks with MC who experiences are very different from my own.

Hopefully the next (civilian) neurologist I see will be a good one and he/she will be able to tell me exactly what kind I have.

Oh, and if you don’t mind, I’ll send you a friend request on FB.

Type of Myotonia: The one that makes it hard to move : )

Country: FL, USA

Re: Facebook???

Eric - I looked on FB, didn't see any in Simi Valley - 1 in Hollywood..... You find me - I think I'm the only Lois Harford there is, I'm in San Diego. I'm easier to find.

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA