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Re: What is going on?

Hi Lauren -
I think the neurologist you saw should be ashamed of himself. There are a number of different types of myotonias, and they can present differently, have different symptoms, be stable versus progressive, etc.

How did he diagnose it? EMG? Do you have insurance? If so, you should request DNA testing, so that you know what type you have (normally, it doesn't just show up out of the blue at age 40, but anything's possible).

Please read our stories on the main web page, and many of the threads here, so you don't feel so frustrated about family thinking you are fooling - many of us grew up with all sorts of horrible stigmas about ourselves, because our families and doctors said we were lazy, clumsy, attention-seeking, fat, or any of a number of other demeaning or cavalier dismissals.

2 things - Do you have any kids? If so, the DNA testing would be justified for more than your own health concerns (such as the risk of malignant hyperthermia during anesthesia). And have you tried any of the voice-recognition programs, to speak your manuscripts into the computer? Even though they are far from perfect, at least it might save you some pain by allowing you to dictate rough drafts, and correct them afterwards.

(I was diagnosed at age 54. I will be 60 this summer. I've been symptomatic all my life, but made to believe there was nothing wrong with me - despite knowing better. My diagnosis was purely coincidental - but it was one of the 3 or 4 best days of my entire life... like being reborn! Vindication/validation is a wonderful thing! LOL!) lois

Type of Myotonia: MC- Becker's type

Country: USA

Re: What is going on?

i started crying when i read your post. it hit a sore spot growing up with my family. i was always the family cluts. not being able to hold onto things with my hands just going limp or a leg giving out on me and falling. i also have it the other way my legs stiffin and it feels like im walking on stilts. the same with my arms and hands. i was told 25 years ago it was myotonia congenita. but now finding this site and reading all the difrent types of myotonia i think its time for me to visit my doctor for some testing

Type of Myotonia: unsure

Country: usa