Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 08-19-2009, 11:17 PM #1
Patsy Patsy is offline
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Location: Sweden
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Patsy Patsy is offline
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Hi All,
Like to introduce myself. I'm female, 53, in Sweden, and have a suspected case of myasthenia (have only had blood tests taken so far). Have rapid onset of symptoms ranging from eye muscle problems (started with spasms of eyelids), muscular weakness in arms and legs, neck, muscular weakness in vocal chords and to top it off now have stiff muscles in my trunk (all in 6-7 weeks).
Hubby and I have two daughters, 17 and 13 yrs, and hubby is away for six weeks at a time (merchant navy). Guess if I'm panicking about onset of rapid decline and he's away...
Have been diagnosed w (and sometimes treated for) anything from lyme disease to toxic thyroid disease over the past weeks. Began to have severe panic attacks after onset of symptoms when eyes and vocal chords weren't working properly and arms and legs didn't function either. Do not have droopy eyelids, do they always have to droop in order for myasthenia to be prevalent?

I hope to share lots of fun and joy here and also chat about what one can do to alleviate symptoms. Have just read about Graveton, does it work or is it hokus pokus?

Bye for now
Patsy
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Old 08-20-2009, 09:37 AM #2
Joanmarie63 Joanmarie63 is offline
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Joanmarie63 Joanmarie63 is offline
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Hello and welcome. Your question about dropping eyes, I have had MG for over 18 years and never had the drooping eye lids. MG effects everyone differently. This is a great site filled with people who understand. We share good and bad days together. So welcome and look forward to hearing more from you.
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Old 08-20-2009, 10:59 AM #3
Pat 110 Pat 110 is offline
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Hi Patsy,

Welcome to the forum! What problems do you have with your eyes? Do you have double vision or blurriness? Is your neuro waiting on the lab results before doing further testing? Hope you don't mind the questions. I believe a lot of people don't have droopy lids at the onset of MG, but many eventually do. Feel free to ask as many questions as you like and someone here will be more than happy to answer them. Everyone is very friendly and supportive. Take care.

Hugs,
Pat
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Old 08-20-2009, 11:09 AM #4
suev suev is offline
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Welcome Patsy!

Each of us is effected so differently (and this crazy MG can give the same person great days and rotten days). My complaint started as a right arn that kept getting heavy with use - specifically golf. I could play 15 or 16 well - and then not be able to control the club for that last few holes.

It took two years (and more symptoms) before dx'd. Got to the point where I couldn't even get 9 holes completed. The more I played, the heavier my right arm got. During that time I also started to notice 'tired legs' and some challenged breathing. But still I thought my arm was only problem - - and the other stuff was just being 'out of shape....getting older, etc.

Now on Mestinon and played 14 holes yesterday on pretty hot day (kinda tired today..lol). I'm very lucky for now (and know it). There are many folks on this site who are in serious circumstances...but you also need to know that there are folks with MG that still a practically normal life with the help of Mestinon.

Sue
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Old 08-20-2009, 01:40 PM #5
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Welcome Patsy
It can be a struggle to get diagnosed, & a struggle afterwards with different things. The mestinon has kept me out of crises since I have been on it though ! A huge relief !
So snuggle in ! It's a great group here !
Mary
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