tam444

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Anyone have muscle jerking (myoclonus)?

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Hi everyone,Does anybody have trouble with involuntary muscle jerking? I am concerned, because I first noticed it only when relaxing, or drifting off to sleep. The last few days though, it's been happening throughout the day. My arms, legs (one or...
Rogain for women

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I've lost a ton of hair, something that seems to have increased as I've titered down on prednisone dosages. A friend of mine said that the 5% solution of Rogain for women works well, but the box comes with a ton of warnings, so I wonder if it will...
Seronegative blues and diaphragm NCS

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I've had MG symptoms for a very long time (Breathing issues, muscle weakness, slurred speech, swallowing problems, etc.) and an MG crisis put me in ICU for a week about 5 weeks ago. Since then, neither my regular neuro, or the neuro specialist she...
How long to recover after crisis?

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I have been home for 2+ weeks after an MG crisis that had me in ICU for a week. Thankfully, I didn't have to go on the respirator, and was kept from getting worse with the Bipap machine, and 5 rounds of IVIG. Since Mestinon was making me really...
Is a home health evaluation useful?

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I am home from a week in the hospital in ICU where I was sent after Mestinon made me toxic and my breathing dramatically worsened. After IVIG and prednisone, I'm still very weak, but breathing better, and I'm so thankful for that. My neuro wants me...
Measuring NIF at home

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I've been laboring to breathe for almost a month, and becoming increasingly sick on Mestinon, so higher doses would not help, nor was extra prednisone doing the job. My neuro has sent me to the ER twice. The first time was a disaster, with none of...
Are dietary changes working for you?

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I'm a newbie, not to MG symptoms, but to DS. I've been trying to get some coping strategies by reading through a lot of the past posts. I noticed some of you saying you've made dietary changes, like going gluten free, eliminating artificial...

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Anyone have muscle jerking (myoclonus)?

Rogain for women

Seronegative blues and diaphragm NCS

How long to recover after crisis?

Is a home health evaluation useful?

Measuring NIF at home

Are dietary changes working for you?