taking mestinon
 

Hi. Is it possible to have myasthenia gravis and not have eye or breathing problems? My neurologist started me on mestinon to help with my arm and leg fatigue/weakness. I have been diagnosed with peripheral neuropathy. The mestinon has been like a miracle for me. I have been increasing it every three days and am now on 60mg four times a day. I am wondering if this means i have m.g . Or if it helps with neuropathy problems.

MG is the only disease I am aware of that they use mestinon for - and yes, it is possible to have mg without eye or breathing weakness. I was diagnosed in 2000 and had slight eye problems at first but mainly overall weakness. It was 5 years before I started having breathing problems and gradually, my eye problems worsened to the point that I have had double vision for 3 years.

We are different and unique and mg likes to keep reminding us of that!

I don't think that anybody really knows whether it could help other stuff. All it does is increase the amount of acetylcholine at the neuromuscular junction. It seems logical that it might help other things that decrease normal levels.

only thing i have read that mestinon can help with other than myasthenia gravis is nerve gas treatment. as on the website I found but yes, thats why this disease is often called the snowflake disease as well. Everyone single person is unique in the disease and we may have simular symptoms we are all different in with how this disease came on. Mine was, arm weakness. I worked in a freezer and in the onset days my arms would grow weaker and weaker till I could lift them no more...then the vision started, double and blurred there were many nights driving home from work that I had to drive with one eye. Then when I knew I needed medical is when I would just fall into my front door after working...or fall coming up the stairs my legs would just give out. But each one of us is different and started different. My breathing wasn't really effected till my crisis in March when I had Pneumonia. Ended up in the hospital, well 3 hospitals for a month. Had a incubator and a NG tube for 2 or 3 weeks of it. Lungs decided they wanted to collapse the night of my crisis too...It's a long story but just to say everyone is unique in this disease and no matter what ur symptoms may be please careful. MG is serious. :hug: were here for support no matter what...:grouphug:

"FDA APPROVES PYRIDOSTIGMINE BROMIDE AS PRETREATMENT AGAINST NERVE GAS"
http://www.fda.gov/Drugs/EmergencyPr.../ucm130342.htm

Nerve gas? Well I guess we're ready for an attack now.

People with Lems take it also. It has kept me semi functional while waiting to get 3,4 Dap.

My patient with ALS took it also.

I have read it seems to help people with ALS.. if this is the case - why wouldn't they give it to most patients with MND if it could help them feel/function better for a while? seems silly to deny that to someone going through that

Adam, Interesting! This is sometimes referred to as prescribing, off-label. And off-label has proven to be a pleasant surprise for some conditions. Did your patient feel there was any improvement?

Hello Bny :) I used to say that I'd eat [I]eye-of-newt [/I ]if I thought it might help. :D The infamous "they" have experimented with carpel tunnel, and Alzheimer's. Problem was and is, the belief that "mestinon" didn't pass the blood/brain barrier. Some researchers in the US said, "Oh, yes it can..." As
well, doctors are limited as to what they can prescribe...and on it goes.