Originally Posted by Denise9293

My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal.

Originally Posted by Panorama

While in the hospital for a recent MG Crises, they gave me a 60 mg tablet, every 4 hours around the clock for 6 days, unless I am mistaken. To be sure, I will check with my neurologist.symptoms. I took this to mean one tablet every 4 hours during my waking time, 4 to 5 tablets a day.

Originally Posted by Denise9293

Since December 2013, I have had extreme fatigue and muscle weakness in my limbs. Also experience trouble swallowing and shortness of breath. My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal. How can I just accept that diagnosis without proof?

Originally Posted by AnnieB3

Hi, Denise. Welcome.

Which tests were done?

Since you're short of breath, have you consulted with a pulmonologist to have breathing tests done, especially those specific to MG such as MIP and MEP? If not, I highly recommend that you do that!

Do you have ptosis or double vision? If so, you can see a neuro-ophthalmologist and they can assess if DV the ptosis is fatigable (which is specific to MG/CMS).

How much Mestinon are you taking? Don't make changes without speaking to your neuro, but sometimes it helps to begin with a lower dose initially. The use of Mestinon can be tricky and too much of it will make an MGer worse. The twitchy side effects might wear off after a week or so. How long have you been taking it? The cramping might be from too much of it.

How long have you had symptoms? Sometimes antibodies don't show up until later in some people. Did they do the AChR and MuSK antibodies?

I would have a hard time accepting a diagnosis without some proof, too. But that doesn't mean that proof doesn't exist. There's also the anecdotal proof of taking a photo of your face before Mestinon and then after taking it, to see if any ptosis of eyelids or eyebrows (or nose) improves.

If your symptoms get much worse, such as not being able to breathe in or out well, you need to dial 911. And if you have MG, you shouldn't be out in the hot weather because that makes MG much worse.

Have you had your B12 level or thyroid checked?

Sometimes it really helps to have doctors other than a neurologist assess your symptoms. It reassures you, and gives you more evidence of a disease. Plus, a pulmonologist is vital to have to periodically check on you. They also know that when you're short of breath that you need pulmonary tests right away, and can usually have standing orders for that, whether you have an appt. or not.

Is your neuro an MG expert?

I really hope you can feel better and have more evidence. In the meantime, take it very easy!

Annie