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

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Old 04-18-2009, 02:34 PM #1
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erinhermes erinhermes is offline
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erinhermes erinhermes is offline
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Teeth Hi Alice!

Hello and welcome to Neurotalk! You are going to meet so many wonderful and amazing people here!

I know the first time I met with my neuro, he did the ice test with me as well - it gives the eyes a chance to "rest" for a bit and if they "look" normal that is a pretty good indicator of MG - at least according to my neuro.......

Is your hubby on any meds? How is his energy level? Some people only have ocular MG - that would be great! Most of us (myslef included) have the general type - fatigue, weakness, etc, problems swallowing, the "norm" for us until we get on meds - prednisone has been GREAT for me! I do have side effects, but the quality of my life has gone through the roof! It DOES get better!

Once your hubby gets his dx, and is on his meds he will feel GREAT!

Again, welcome to neurotalk - you are gonna love it here!

Big hugs!
Erin
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Originally Posted by AliceH View Post
My husband went to the doctor Tuesday for some inflammation around his eye, and the doc (not his usual PCP) expressed concern about his droopy eyelid and told him to see an opthamologist immediately. We were able to get in with an opthamologist that day, but found a group of opthamologists/optometrists that assured us that if we needed an opthamologist they could drag one in from down the hall. The optometrist did the ice pack test but didn't say anything about her findings. The next day she called us and said she wanted us to see the plastics guy in their group who specializes in eyelids. He did the ice pack test again, taking before and after pictures, and there was noticeable improvement. He mentioned myasthenia gravis and is referring us to a neuro, who can't get us in until April 30.

Is there anything besides myasthenia gravis that would cause a positive reaction to the ice pack test? We're trying to get an idea of what we're in for, waiting for a diagnosis isn't fun.
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Old 04-18-2009, 03:00 PM #2
AliceH AliceH is offline
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He's had quite a bit of fatigue for a while, but that may be stress-related - he works more than he should. He's had a number of small, probably unrelated symptoms/issues for years, but he's gotten so used to being told it's in his head or that there's just no good explanation for the aches/pains/not feeling right that I doubt he knows what is connected to what. He pretty much blows off anything medical now until it gets to the point where it can't be ignored.

We're hoping at this point it's just ocular and stays that way - I consider the 16-20% number I've been seeing tossed around for ocular MG not progressing to generalized to be pretty promising. He doesn't think he's noticed any muscle weakness. He's had the eyelid droop for six months - his PCP said she didn't think it was anything when he went in for something else and mentioned it. So we're not seeing a rapid decline, I don't think.
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