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Old 06-01-2012, 05:54 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Abby, I'm really trying to understand where you're coming from in your recent posts. But I'm getting mixed messages.

Okay, so on this thread you say it must be MG causing the periodic weakness but then on the other one you say it could be HKPP. Or a channelopathy, which I had brought up ions ago (sorry couldn't resist the pun).

So what's really going on? Do you doubt the MG, so you're trying to find another reason for odd symptoms? Is it that you really do believe something else is going on? Are you discouraged due to how long you've been on Imuran and can't admit that sometimes MG just sucks even with treatment? Are you trying to define it so you have more ways to fight it?

Could it simply be that you use certain muscles more and, therefore, they are always weaker? Or is it LEMS and the less you use your muscles the weaker it momentarily gets and then gets stronger after you use them? If LEMS is even a possibility, you need to know because it can come with cancer risks.

Quote:
Unless...did I read somewhere that sometimes with MG, if you tire one group of muscles, sometimes they all get weak?
Early on in my diagnostic process, I couldn't figure out why when I walked to an appt. at the University why my arms would be so weak! Yes, even if you are not actively using one muscle group, the others can get weak because the antibody attack isn't too particular which area it attacks. Also, I do suspect that any physical activity kicks up MG and the antibodies. You could be using your legs while your MG is busy attacking the neuromuscular junction of your arms. That's why MG is the most seriously stupid disease on the planet! You can't use your logic to figure it out because it's illogical.

I don't know what to tell you but to investigate all possibilities. But don't make yourself nuts in the process! None of us can know what's going on but so many of us are really trying to help. I hope your doctors can get to the bottom of all of this. Take care.

Annie
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