My wife takes mestinon and prednisone and cellcept doing ok right now,had 5 course of IVIG last week in the ICU dont have insurance but Doctor said she needs it Im giving it to her..we have a pretty good neuro

After arguing against the thymectomy and won, we discussed all my treatment options. I chose (not wanting to) prednisone, Imuran and was already taking mestinon. I went from a 10 (worst) to a 1 on the testing. I will be off the prednisone next week (woo hoo) and am only taking one to two mestinon per day. If I can get off the mestinon and score a 0 or 1 on my next test, I'm imuran free also. Right now I'm considered in remission but with drugs by December my goal is to be in complete remission.

I too have stenosis, degenerative disc disease with one ruptured and 3 bulging, and arthritis in my facet joints. I have to say that when I was on the mid dose, I felt much better backwise. Now I'm relying on yoga and acupuncture. Don't let him try the yoga yet, it took me 8 months to get it back. Doc's orders.

He may be able to go back to work, but I would advise him to file for disability anyway since it takes so long. You can appeal as many times as you would like. It's not much money, but medicare helps pay the doc's. If he gets approved and goes back to work, no biggie. Even with all my dx's I still think I will go back to work someday. I'm using this time to take it easy and heal. It seems to be working.

If he hasn't taken the mestinon, take it. He will be amazed. That was my first clue during my denial phase that I had MG. When he starts the prednisone and wichever immune suppressant is chosen, he may feel worse. I felt awful!!! But I got better because I stuck it out. A lot of the side effects go away after sometime. Take the mestinon with food. If not he'll be cramping and running to the bathroom.

This is his 2nd day on mestinon and he's pain levels are a 10 and he spent majority of day n bed. I read stories that say u would see results in an hour??

Mestinon does nothing for pain but helps the muscles work. You feel the effects within an hour because you will stop slurring or your eyes clear up. legs feel stronger etc. When I was relying on it daily, I would get very tired before it was time to dose, didn't even have to look at a clock to know. Prednisone should help with the pain. Is he on that?

He has spinal detoriation, has loss 50 percent of muscle mass and has had bone changes, so dont think they where 2 excited...he is on roxicodone 15 x 4 day and fentenyal but the last 2 times they tried prednisone, he felt better but his liver didnt seem 2, his ammonia levels elevated too....the mestonin is not giving any noticable relief and he has complained of more pain and stomach is more upset than with the H-Pylori meds. .....with him having celiac and on all these other meds, and the endo talking about testerone supplements....I just want him 2 be better...he wants 2 go back to traveling all the time,riding his motorcycle, and WORKING...insurance denied IVIG, so we look for medicines, but its been a few days and more side effects than good. His vision would always come and go..and each week he would have waves of excaberation(somedays with breathing) each day is different...but when will we know if mestonin works?

He probably needs more help than just the mestinon right now. Have they discussed any injectable steroids? I don't think they are metabolized by the liver, I know they are better for the stomach. You have to excuse me because I just read about this in my prednisone book. I would look this up on the internet as I am not as informed as I would like to be and ya'll need help now. Are they saying his loss in muscle mass is due to atrophy? Mine is. There are some websites that say this only happens in rare cases or cases that have gone undiagnosed too long. I happen to be in the latter category.

The mestinon is not a wonder drug, but it does help us function. I don't fall down when I'm on it. I can wash my own hair, but does nothing for pain or the overall fatigue. Which several of my dx's cause fatigue so I'm no expert.

If you all think IVIG is the best option, I would search for charities to help pay the cost. There are a lot of church charities that don't care your religious status. We have a huge catholic charity here that is helping a soldier with GWD (which I'm positive is the cause of all my problems) pay for all his treatments. There are other organizations that are not religious, they are just harder to find. With those it sometimes takes just speaking to the right person to find out they even exist. I wish you all the best.