If Mestinon helps me with muscle strength and balance, is that enough to assume that I have MG even if all my tests come back normal? I am only on a low starter dose of 20mg tid(60mg daily) but it makes a noticeable difference within 20 min in my ability to walk and this morning it helped me with swallowing although I still couldn't eat oatmeal, but I was able to choke down a banana.

If mestinon helps it's a pretty good indicator even if all tests come back as normal it does not mean you are not a myasthenic many people have only a clinical diagnosis.

Not wishing to frighten you but I do not think it is a good idea to choke down anything if you are having extreme swallowing difficulty it may be best to concentrate on liquidized food until things stabilize, and even that with caution I have choked on my own saliva in the past.

I am on 140mg Mestinon per day, still a relatively small dose. And yes within 30 mins of the first morning dose, almost everything is back to normal. But the test have come back negative.

I am scared that if the next Neuro, says negative, that they will take the Mestinon away.

The thing about Mestinon is that it is different for everybody. Typically they prescribe three 60 mg tablets (180 mg a day) not closer that 4 hours apart. I can tolerate much higher doses. When I was in the hospital for my recent MG crises, my neurologist administered a 60 mg dose every 4 hours for 6 days.

The MG Manual has great section on cholinesterase inhibitors:

No fixed dosage schedule suits all patients. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently—with any dose, some muscles get stronger, others do not change and still others become weaker. The drug schedule should be titrated to produce an optimal response in muscles causing the greatest disability.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 17

-Mark-

When you don't have positive test results yet, neuros will often begin with a lower dose of Mestinon to see if you respond to it. They don't want to overdose you, in case you don't have it.

Are you having any side effects, such as increased saliva or diarrhea?

Mestinon kicks in after about 20 - 30 minutes. It lasts for about two hours after that and then wears off at about the 2-1/2 hour mark.

Too much Mestinon can cause a cholinergic crisis, which means too much acetylcholine going to the muscles.

Too little Mestinon causes a myasthenic crisis (too little acetylcholine), which you might have already had!

The fact that it's working is probably not a placebo effect! It does work on some CMSs and LEMS, too.

You could try a banana dipped in some rice protein powder to get the protein your body needs. They have a lot of protein powders to choose from at iherb.

http://www.iherb.com/Country-Life-Gl...3&sr=null&ic=2

When do you see the neuro again?

Annie

Im new to this forum and did a little search for different MG stuff..
Found this old thread.. I just need to tell you my mestinon intake..

I have been taking 60mg every 3rd hour im awake..for about 12 years..
I get double vision from time to time.. and then the mestinon don't seem to have any effekt.. but I just keep taking it..

And in Sweden this is no big dose!!.. its normal..

If I accedentaly forgot I took a pill and take another.. I can feel it..
I get some muscle spasms in my thumbs and a little in the face.. not visable.. but I feel it..

just sharing my experience

My MG blood tests came back negative. I take 60mg mestinon every 2 1/2 to 3 hours. (7 pills a day). It works great for me. Last year I was in the hospital out of state and they took it away from me saying I didn't have mg, but I started it back up as soon as I was released. Different doctors seem to have different opinions. Some say if Mestinon helps then you have mg. Others say you have to have the antibodies. As long as they keep giving me my mestinon I guess it doesn't matter what they call it. I usually say I have a myasthenia- like disorder

It often astounds me how ignorant the medical profession can be. If you have antibodies then it is pretty sure you have MG true, but the opposite is not the case not having antibodies show up in a test does not mean you do not have MG.

John

I even asked my Neuro. What other conditions does Mestinon work for? Because it works for me and if I don't have MG I'd like to know what I do have?

He burried his face in the computer and couldn't look at me. He certainly couldn't answer me.

Hi juliejayne,
The indication other than MG for Mestinon is to accelerate bowel transit...
Maurice.