I am certainly not qualified to give medical advice but my own experience since diagnosis has been that I have multiple and some overlapping problems and it is taking a long time to identify and address all of them. For example you mentioned you stop breathing when you sleep...do you have CPAP? many MG have sleep apnea. I do and not having CPAP was absolutely making my other issues worse. It could be a long and very frustrating journey but this is a wonderful resource with many much more wonderful people than myself here to help

Stephaniue

Thank you all for the advise as well. I must admit that I was a little apprehensive about sharing my recent diagnosis of MG with you all because I have had some less than desirable results in the past with public forums. You have been very nice in your response and advise however, and in doing so, I have found a small measure of comfort in knowing that I am not alone.

Thank you all,
UncleBob

When I first started taking mestinon, I would have twitching in my tongue and mouth a lot. It scared me at first. It doesn't happen now. Sometimes it will make my bowels pretty spastic. When that occurs, I take imodium (with my doctor's blessing.)

Sorry to have to welcome you to our unhappy little club.

Hi Bob - welcome!

When I first started taking Mestinon, I felt like I was drunk...and/or hung over. So, with my neuro support, I started taking a 1/2 tab (30 mg) every 4 hours. After quite a while, I went to a half tab every three hours, until finally I got the courage to try the whole tab...and it was fine. Been on 60 mg every 4 hours ever since. I have never been on timespan at night - not because there is anything wrong with it...I just don't need it.

And oh yes...in the beginning I had lots of twitches too. Drove me crazy! But that rarely happens now.

Always be sure to have something on your stomach when you take Mestinon (whatever the dose!) Mestinon does have nausea as a side effect - but having food on your stomach helps A LOT.

I hope you find the right adjustment by working with your neuro (yes they are all notoriously difficult to work with).

Are you by any chance taking prednisone as well? Pred and Mestinon is more powerful than Mestinon alone.

I have read some of the issues with mixing the pred. with the mestinon and that is a good question but no I am not. You all seem very sincere in your comments and questions so I will give you a quick summery of where I am at with my health situation.

When I was in the 7th grade I played football. I would break out in a very bad rash when I would sweat and it itched like poison oak but would go away after a shower. I assumed grass allergy but after he made me see an allergist I learned that I had Cholinergic urticaria. This carried over into my adult life and progressed at times making my decision to become a Computer Technician a tactical one as computers need to be temperature regulated. Well I excelled in that career and 25 years later after eating a whole lot of fast food and donuts sitting on my butt all day I reached a weight of 400 lbs.

I developed re-curing abscesses around my groin area and due to embarrassment of going into the ER I read up on how to lance and care for them myself. After years of this I finally had to go see a doctor because of the increased level of pain and the severity of golf ball size abscesses. My doctor diagnosed me with severe Hidradenitis suppurativa and prescribed me Oxycodone for the pain. For obvious reasons I was also diagnosed with Type 2 diabetes.

Now in painting this picture I would like you to know although I have struggled with Severe Itching Rash and Severe Pain in my groin I have managed to lose over 100 pounds working out and using the treadmill with diet changes of course. (little pat on the back there)...

So here we are now and you can imagine my joy when I just start feeling SOOOoooo weak All the time and can't explain why I am waking up in the morning with my whole body numb feeling like I just came off a 20 mile run. and when My right eye starts drooping and I can't hold it open I am thinking Stroke. Well you all know the story after that so please give me a little slack if I tend to seem a little bitter at tines. I may be down but don't count me out! I WILL WIN THIS TOO!

So in Summary suev, I am on diabetes meds, hydroxazine, oxycodone 30mg x4 a day and now Mestinon.

UncleBob

I have decided to give this Mestinon another day in court. I have split the 60mg tablet in half and going with 30mg 4 times a day. I will not take the 180mg (timespan) because you cannot split those according to instructions.

An interesting note: My neurologist still has not returned my messages so I will take personal responsibility in making these medication adjustments in hopes that some progress will be achieved.

Thank you once again for your suggestions and sharing your experiences with me. I will try to post my results in the event that someone else may be going through the same frustration.

UncleBob