Susan,

I just discovered I was taking too little Mestinon - and have now started 30mg every 4 hours 3 or 4x / day. (Sometimes I skip the last dose if I'm just relaxing at home.)

What a huge difference it has made! No side effects, but much better effectivity. I hope this works out this way for you!

Sue

I definately agree that sometimes it seems that the amount of MEstinon required to help me gives me overdose symptoms...Sucky!

Sue, this is exactly what I have been doing these last few days. With the smaller dose (30 mg instead of 60 mg) I get less of the side effects, shaking/dizziness/nervousness, than I did with the full pill. This is much better, no more morning dizziness or me feeling less crazy from the nervousness.

Hooray for Mestinon!

YES, Steph, this is OFTEN noted by MGers -- one of the "fun" parts of taking Mestinon. The "trick" is to take just enough to help the "bad" part of your body -- but, not so much that it will "hurt" the "good" parts. A slippery slope, huh??

THAT is why, after a while, MANY of our docs give us carte blanche to regulate our own doses.

Hi. I was recetnly diagnosed with MG. The diagnosis years in the making. Also have Lupus and Fibromyalgia. What a combo. I take Mestinon...Timespan int he morning along with 30mg of regular Mestinon. Then I take 30's latre afternoon, early evening, before I go to sleep. Better with the drug. Realy bad GI problems not all from Mestinon. I also take Cellcept. They all cam wreak havoc on your stomach. I feel like a prisoner in my home on most days. Imodium will allow me to get out. My eye lids always feel heaqvy as do my arms and legs. My speech can become impaired at the drop of a hat so I always carry mestinon with me and Ativan in jase I strt to get a panic attack. Any real physical activity and my breathing becomnes very labored. (another reason for the ativan to keep me calm) I've been trying really hard to keep working but I don't think I'll be able to continue. Anyone applied for Social Security Disability? So glad to have found this thread. Thanks everyone.

If I had the strength to go downstairs and get a 60mg this would be a longer post. But I don’t, so I won’t. I have a love / hate (mostly love) relationship with Mestinon. I take what I want/need when/as needed.

You are STILL working with Lupus, Fibro, AND MG?? HOW????????????? YES, I am on disability -- and I "only" have MG. I'll go and find the Soc Sec requirements for acceptance with MG and post them here.

From the Social Security website -- you qualify for disability if you have the following:

11.12 Myasthenia gravis. With:

A. Significant difficulty with speaking, swallowing, or breathing while on prescribed therapy; or

B. Significant motor weakness of muscles of extremities on repetitive activity against resistance while on prescribed therapy.

Hi Ellen
welcome to the forum, like Jana, I to am on disability just with mg.
Sometimes I think I'm fine, then a day like today comes along, when tyyping is difficult, and I remember how bad my bad days can be. But I'm off to my sisters so that means seeing my two gorgeous "niece" dogs( a rhodesian ridgeback and a kelpie), and my gorgeous horse Sally. Yes I'm very excited. Sorry once again to hijack the post!!! :-)
Kate

Hey Ellen,

Welcome to the group! Boy, you sure have a lot going on. I'm glad to hear most of the meds are working for you. I only take Mestinon for the MG, but I sure understand about the GI problems it causes. I've been taking it since my dx in 01. Again welcome and hope to hear from you more. Everyone is great here. Take care.

Hugs,
Pat