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Re: Quality of Life Comparison

Thanks Jenna. What did you think about the article. Perhaps we are a littlew closer to doctors actualling this disease seriously.

Type of Myotonia: still unknown

Country: USA

Re: Quality of Life Comparison

Teresa:

Vindicated! Again.

When I was younger, before I had any of my current diagnoses, I used to sit there on my bed and think to myself "Is life really supposed to be this hard?"

Either it was, and I was just lazy, or I was dealing with things others didn't have to deal with. As I got older I started to lean towards the second option, I was dealing with things others didn't have to deal with.

When I finally got a diagnosis of myotonia, weakness was not recognized as a symptom of myotonia congenita so for 10 years I had a diagnosis of "atypical myotonia" or just "myotonic disorder" and there was the question of the possibility of having DM2/PROMM, that was not resolved until I got genetic testing.

Over the years I've started to see more and more of these "atypical" symptoms I have show up in the literature as reported by other individuals with myotonia congenita, and while I had always suspected it was part of the disorder, it was nice to have more definitive evidence.

People with myotonic muscular dystrophy frequently have neurological involvement that results in apathy so that might be one reason they don't report a lower quality of life than those with MC, despite the fact that they tend to have more pronounced weakness, and are more prone to multiple health problem. But I think one of the reasons that those with MC report the lowest quality of life is that our symptoms tend to be more constant, less recognized, and we are more often held to standards we can't meet.

Type of Myotonia: Becker

Country: USA

Re: Quality of Life Comparison

I completly agree with you on this. I really don't think they have a clue sometimes. My doctor argued me down that mexeletine doesn't even come in 250 mgs after his associate had written the prescription for it and I had been taking it for over a year. He wants to drop me back to 150mgs. If he doesn't know any more about the medication then I doubt he knows much about the disease. BTW he is over the MDA clinic in my area. I just hope all neuros dealing with MC will look and learn. I've always thought my symptoms were far worse than what is doccumented in the research I have done. Reading this report was like reading something I had written about myself.

Type of Myotonia: still unknown

Country: USA

Re: Quality of Life Comparison

Thanks for bringing this report to light Teresa. I have not been able to read it fully yet but what I got from the summary did not surprise me.

I'll reply again when I have digested the full report.

Type of Myotonia: Becker's

Country: England

Re: Quality of Life Comparison

You are welcoome.

Type of Myotonia: still unknown

Country: USA

Re: Quality of Life Comparison

Okay, I've read it, it was like deja vu!

I'm glad that the paper was written but I see no evidence, in Britain at least, of it changing anything.

That said, I also experienced the feeling of vindication with regards to my attempts to communicate what I actually felt to the medical community!

The fact is that if you have MC then the chances are that you are never going to get either the recognistion or the support needed to cope with it, which means that the low quality of life view is hardly surprising!

Type of Myotonia: Becker's

Country: England

Re: Quality of Life Comparison

I really have a difficult time getting people to believe I have a problem with my hands, fairly limited to writing. I had to rest half way through addressing an envelope the other day, which I'm pretty sure isn't normal. It's been a problem at school.

Type of Myotonia: Becker

Country: USA

Re: Quality of Life Comparison

I don't do much handwriting these days but when I did it used to change depending upon how severe my symptoms were. I always prided myself on a clear, concise style but it was difficult to maintain this when the MC was particularly bad.

I have a problem with the speed of my typing, and accuracy too, that is clearly linked to the MC.

Type of Myotonia: Becker's

Country: England