Member
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Join Date: Jun 2009
Location: Texas
Posts: 748
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Member
Join Date: Jun 2009
Location: Texas
Posts: 748
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Hi Teelae...of course every one is different and there is no 'pattern' to MG or its progression. That said I can tell you that I looked for a diagnosis for about 2 years - - and have been diagnosed for almost 2 years now. I was clinically diagnosed since I am sero neg and a border line fail on the SF EMG.
So over the 4 years, here's how it went with me.
First arms - heaviness after (during) activity. Noticed it most in upper arms when trying to reach for something, or shampooing hair. Brushing my horse became an exhausting affair!
Then about a year latter, hips felt wobbly / achy sometimes when I was climbing stairs. I had to stop riding my horse. Just couldn't get muscles to work right for any length of time.
Once diagnosed, started mestinon ( I have never taken anything other than mestinon so far - - and have never had any hospitalizations or crisis).
In the past two years, I have quadrupled the amount of mestinon I take on a daily basis (under neuros supervision...I started on a very low dose!).
Probably year 3 (about one year ago), I began to notice the bulbar symptoms. I always used to whistle or hum or sing a tune when doing chores around the house or driving somewhere. Always had the radio on. No more. Just can't get my voice, throat, jaw to work like I need it to after one song. Besides, it's to frustrating when my voice is breaking or when I can't control the pitch (this even has begun to happen now at times when I'm just trying to talk!)
But on the positive side - I still mow the lawn and work in the landscaping (it just takes longer!). I play golf 4 -5 times a week - but fewer holes and always with a cart. My husband and I try to walk 1 mile every day (sometimes I have to have a rest along the way - but sometimes not). Now I must say - I only do the golf and the walking if someone is with me...just in case.
I don't get sleepy tired, but whenever I don't get a restful night's sleep the next day is a 'weak' day.
Mostly, I have adapted as things have gone along. And quite frankly, just writing this note has been a bit of an eye opener for me. I try not to acknowledge the changes to myself.
So that is my 'case' in a nutshell - - but remember every one is different. And it is confusing. And it can be quite frustrating. And it is not fair. Hope this helps you in some small way.
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