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Member
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Join Date: Oct 2006
Posts: 371
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Member
Join Date: Oct 2006
Posts: 371
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Hi Again, Was curious about something you said. You said that it's like the energy is there, just can't move your muscles. When I get weak, and remember we're all different, this is why it is known as the Snowflake disease, as we may all have the same disease, but it affects us differently, hence, no two are alike symbol.
Anyways, when I get weak, I know the Energy isn't there, and I better get indoor, or go lay down, or my body will fall down, and it doesn't seem to matter where. Stairs are an energy killer for me, and so is doing laundry. (folding mostly)
Sometimes, I'll be reading a book, and every 15 minutes or less, will have to close my eyes for 20 minutes or so, as my lids want to close, as though I am about to fall into a deep sleep, with out the sleep feeling, just heavy lids.
Now, having said that, I should tell you some of my other medical problems, I am a Narcoleptic, I have Dysautonomia,Mild Pulmonary Hypertension, Raynauds, Prednisone induced Diabetes, stage 3 kidney disease, acid relux, anyways, those are the biggies. So, I do have cross symptoms, but the above is definitely MG related.
Also, If I'm active today, I'm usually weak and tired for a few days afterwards. I have a saying.."NO Good Day goes unpunished" And it's true with MG. An Expert in MG once said, "the only thing predictable about Myasthenia Gravis is it's Unpredictability" I wish i could remember his name, but it escapes me now. He was at the MG conference, I believe 3 years ago.
Could you make a list of all your symptoms? I'll try and help as much as I can. Since being diagnosed in 2004, I find myself reading, and keep myself updated as much as possible on this disease.
Best of Wishes.
Oh, and Erin is right, take Mestinon, mine are in pill form, with food, other wise, you'll be sending someone to the home depot for a good strap, to strap that toilet to your behinder..At least this is the effect it has on me. I have a prescription to combat that part.
One last thing, before going on any MG meds, especially Prednisone, please please, educate yourself first. I was first put on in before I even left the Hospital, never heard of it, didn't know anything about it, until months later, which is too late, really. Although, it has saved my life, it comes with tons of baggage. You can Never just Stop Prednisone, ever. Very dangerous to do so.
And for some, the body can't get off of it. I've been on prednsione since 2004, and right now, my body can't get off of it. I crash terribly. I'm so thankful for it, as it did save my life, but on the other hand, not a big fan of it at all.
Love Lizzie
Keep asking questions.
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