is that 14-15 60mg mestinon per day? I only ask because I many times over medicated myself with the mestinon and ended up VERY VERY weak and I know it is hard to know when it's new MG. I'm sure stronger would be better for surgery but maybe they are thinking that it would be worth the risk if you still not close to being under control. Is your doc a MG specialist?

Hello kristy, it sounds like you are on 900 mg of Mestinon per day WOW!! That really sounds like too much. I am on 240mg per day. That may be exactly the reason you are weak. I too was weak for my first surgery this past August. I then scheduled it for October in Houston, Texas. I am from Buffalo, New York. I had robotic surgery look into it in your area. The insurance companies will cover it. You need a Thorasic surgeon trained on the Di Vinci machine. You need to get stronger, but get your meds right! Feel free to asdk me any questions.

Couple of weeks ago I tried cutting back my mestion which I have done a few times. I tried 6-10 mestinon for 3 days and I kept falling when trying to get off the toilet or stand up. Then when I go back on 2-3 hour, my walking and talking is better. Even after the IVIG treatments I still don't even get enough strength to go out and check the mail box just taking a shower everyday is the hardest thing I can do. My first neurologist is not an mg specialist and the second one I found through the MDA clinic. I have been without health insurance but my old employer is trying to get me on Kaiser insurance as of December 1st. About 6 or 8 weeks ago I went off the mestinon for 24 hours for my second EMG and I had to go in a wheel chair and couldn't talk or swallow well at all.

I'm sorry to hear you are feeling so poorly. I am not a doctor so you should check with you physician before changing any meds. My neurologist told me never to take more than 6 of the mestinon tabs in a day. She said more than this will actually make the myasthenia symptoms worse instead of better. Check with your doctor about it. Hope this helps.

You must be really scared. My daughter was diagnosed 1/08 (when she was 13) and went from playing power volleyball the beginning of January to being completely bedridden and having trouble swallowing by March. The mestinon was ineffective at preventing her decline. She had her thymus gland removed at UCSF on April 10th by Dr. Diana Farmer. Dr. Farmer has performed approx. 15 of these surgeries using scopes thru the left side. My daughter did not need a chest tube or respiratory support and went straight to a regular room. The surgery halted the disease progression and allowed her to regain enough strength that she now attends public high school. Dr. Farmer is the chief pediatric surgeon, but my daughter's surgery was observed by a large number of surgeons because it is such a new technique. Her office is very responsive so I'm sure that they could answer questions for you. You might be too weak to have your chest opened, but this was a very noninvasive surgery. Let us know how you are doing. Sarah100

I'm sorry to hear that you're having such a rough time. I was also told by my neurologist that anymore than 4 tabs a day would actually reverse the effects of the medicine and make me more tired. He also said that I had to be at my strongest to have the Thymectomy as the symptoms will most likely come back immediately proceeding the surgery. I would definatly get another opinion on how much meds you should be taking and wait to build your strength up before considering anything major. I'm still healing from my thymectomy and you will need all the strength you've got. Hang in there.