It's the generic pill..

Hello, so glad you found us here at this very supportive group. I was also given the trial of Mestinon prior to an official diagnosis ; it helped significantly and shored up my pending diagnosis-to-come of Myasthenia Gravis.

Mestinon is fairly well-tolerated by most people, but just like all meds their are side-effects.

The good thing though is that within an hour or so after you take it, if you have MG (or LEMS?), if the Mestinon works on you, you will know right away and be feeling better.

I am concerned though that only "half of a 60mg tablet" may not be enough to show any considerable results.

My neuro started me out on 60mg, and increased 15mg at a time (1/4 pill) to see at what level I felt best.

Of course, I'm not a physician and every body-type is different.

Keep us posted, and Welcome. Chris.

Thank you for your response. I only took the half for two days. Today I take a full pill, for one or two days, then take twice a day for 3-4 days then 3 pills a day. I was very grateful the doctor told me to have a good amount of food with it. I did fine tolerating the half. Hope that is the same with the whole pill.

Is there any way to keep symptoms from getting worse if I rally do have this. I sing and wonder if sing helps strengthen the breathing and maybe help to not get the breathing problems. I've never smoked. Maybe if you don't know then I could ask in another post. Right now I'm pretty much house bound except I put efforts to try to go to church weekly even if I couldn't stay the whole time. I miss singing in the choir. I sing a strong Alto. I still sing the congregation hymns. Just can't make it to choir practices.

I am just days New to all the MG information. My neurologist only talked about the positive possibilities, not about the other very concerning ones. I am grateful there is a possibility for remission.

My main problem is the terrible fatigue that puts me flat in bed for hours and the terrible what I call bio-chemical head to toe feeling that makes me feel like I'm on the edge of a biological cliff. It really scares me and if my husband is at work 40 minutes away I have someone call me every 15 minutes until the worse leaves me and then I feel I can deal better even if I have to stay down for hours. During that time I feel like I will fall just walking 14 steps to the toilet. Do other people have a weird sensation too when they are forced to bed?

I can't seem to figure out just how much I can do avoid. I do very little in the way of standing because it just takes seconds before I feel I need to sit down. I've only cleaned a half sink or toilet before I have to lay down for at least an hour. I can't shower in the morning and have to in evening Saturday or I won't have enough strength to walk into church with a cane. (My husband's decorative canes which I use two of on really bad times around the house.)

Thanks for reading and responding.

IT WILL GET BETTER. It's always worse (and more dangerous) for us in the beginning.

You are at the beginning of the learning curve for this disease, and how your body handles it. Research this site, work with your Neuro, learn as much as you can.

You will start to stabilize once you and your Neuro figure out the right combination of med(s) and treatments that work for you.

ALL OF US ARE DIFFERENT when it comes to this disease, and the treatments that are required to be effective. All of us are at different levels of disease progression, and we all take different combinations of medicines.

Prepare yourself mentally for the strong possibility that the Mestinon may NOT be the only medicine or treatment you need to become stable again.

The fatigue you speak of is a stark reality for us, and a result of our over-active immune system. Our body's can get very tired, very fast.

You will always have MG, but with proper treatment and a healthy diet, it WILL become more manageable. It is a life-changing disease, but you will adapt.

I was convinced I had ALS in the beginning, but did not. What a relief, comparatively speaking.

How is the Mestinon working?

After re-reading your post, it appears you haven't officially been diagnosed with MG, but your physician must have a strong suspicion of such. For him/her to give you a "trial" of Mestinon w/o an official diagnosis is very suggestive that they are proactive, and IMO committed to making you feel better.

Is this physician a Neurologist?

It sound like they've already started the bloodwork. For some of us, the bloodwork does NOT show we have MG. That does NOT mean we do not have MG, it just means they could not find a particular antibody they were looking for in the sample. If your bloodwork would happen to also come back negative, the physician will want to do other tests that are "electrical" in nature. They are NOT fun, but you will be just fine IF you have to do them.

IF you have MG, to get a strong diagnosis is very important.

For now, rest, rest, and more rest. Try to stay calm, as stress is well-known to aggravate our condition.

Take care and keep us posted !!!!

Yes I am working with a neurologist. If they have to listen to the neurons or whatever I will have it at UC Davis Medical Center or San Francisco. This was only the second trip to this doctor. I've had all kinds of other test ruling out other things. It's been four and a half month from quick onsit of symptoms. I feel badly that others have had to wait so much longer then me so far. I've had a lot of prayers on my behalf, prayer that I will be able to Ben calm during this time and I also felt it important so as to have the doctors understand that is wasn't and emotional problem I was suffering with. I also have someone who does transcription work and could point me to a good doctor in the area. My doctor leaves for three weeks vacations I will see him again in five weeks for follow up. My other doctor and Internist may have to tell me results. She also has been a blessing.

Thank you for responding to previous post.

I was just able to get off low couch and off the toilet without pain in my knees or using my hands arms to help. No noise in the knees either. It's been years since I've been able to do that. Still feel General weakness in legs.

At the top left of the page is a link for Myasthenia Group. Look there for a lot a day to day tips. Information about Treatments are there also, although someone complained that it is not updated. I can't imagine that very much has changed in just 3 years. I know that Rituxum is new. I fully remember when I did not have a DX. My heart is with you.

Mestinon peaks in about an hour, if you take it with food and in the pill form. If you feel better in an hour, then it probably is helping. That's how I always tell if I need more, or if I am taking too much. Always talk to your neuro before adjusting your mestinon. It could be that you need more mestinon for it to really work for you, if you have MG. My doctor let me try mestinon before my DX and I noticed a remarkable difference immediately, but sadly it's not so with all of us snow flakes.

Rest is the most important thing to do right now. I know it is frustrating. MG is progressive and without treatment, it can move quickly. I don't mean to alarm you; I just want you to be aware.

Be encouraged about the singing. With the right treatment, you should be singing like a bird ! :-)

It took awhile for my neuro to start me on prednisone and Imuran. Introducing too many meds into our system isn't good for us. Unfortunately, most of the meds we take are loaded with side effects.

Keep in touch with us!

I was able to take 90 every 4 hours.
I would tell your neuro you want an experienced nuerologist in neuromuscular conditions to see you while your doc is gone.
This is serious business. You apparently aren't getting better and worse is not going to be good.
You are most important here.