Myasthenia Gravis is A Cyclical Disease

Posted by Connie on Monday, July 28th, 2008 at 9:21 pm and is filed under Chronic Illness, Health Information.
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I like doctors who tell it like it is, no sugar coating for me please. I want a good bedside manner of course, someone who is friendly and respectful. But when it comes down to the nitty-gritty I want the truth.

That’s one of the reasons that I love my neurologist. He gives me hope but not false hope. I can remember about 2 years ago going to see him for my check up. I was so excited to tell him my good news. At that time I was taking 60 mg of Mestinon every 3 hours and 2000 mg of Cellcept. The Mestinon dosage had dropped considerably (from 120 mg every 3 hours) and I was feeling great.

When he came in to the exam room, I was bursting with pride. I told him that I was in remission. He smiled but didn’t seem very excited. He did his examination and was very pleased with my improvement.

Then we talked. He told me that he doesn’t use that the word “remission” can be misleading. That is what he aims for of course but there to be in real remission would mean not having any symptoms for years in his opinion. Also he’d want me to be able to lower the does of Cellcept.

He said that he was very happy that I was feeling so much better but for me to not get lax on reporting symptoms at the risk of feeling that I’d be letting him down. If I continued to improve or stay the same by my next visit we’d lower the Cellcept.

Many things have happened since that visit. I’ve learned that Myasthenia Gravis is a cyclical disease. You may be feeling fine and it may just hit you out of the blue.

I can feel the symptoms hit me when I go outside into the heat many times. The worst is going from my cool house into a very hot car. Saturday night I was sitting here writing on my blog and all of a sudden I started to feel yucky (yes that’s my medical jargon for MG symptoms). Sure enough, my voice starting slurring and my muscles started twitching.

I stopped blogging, checked the time for my next Mestinon dosage and waited to see if I needed to take some extra. Since it was close to my next dose, I just took that. I still needed some time to rest and was worn out for a few hours.

Right now I’m taking 90 mg of Mestinon every 3 hours and 2000 mg of Cellcept. So much for my remission, but if you knew how sick I was when first diagnosed five years ago until now, you’d see that I’m doing so much better.

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