Myasthenia Gravis

Hi- new to MG and magic mestinon. Wondering if anyone has any suggestions about when to take it- at what symptom level. Sometimes I try to see if rest or something to eat will take care of symptoms, often doesn’t. Then I’m almost immobile with eyes closed and have to sit for a while til it kicks in.

Does waiting too long mean slower recovery? Is it better to take when symptoms first start? Thanks.

My Left Eye droops POTIS, caused by I believe MG. Why have no eye doctors or other dr’s called this to my attention?
I am wondering if a neurologist is the correct Dr for this analysis?

Be (bee) aggressive with this. It can kill you quickly. I have been taking mestinon for 5 years. I get up early so first dose is 6am. Next 10am then 1pm and 9pm. more causes diarreah. Some can take more but 4x daily is my limit. It is a good drug for limited MG problems. MG has put me in the Hospital 9 times, 5 of them in Neuro ICU. IV retuxamab, solaris, vyvvgart, IVIG. Pulse dose Steroids and oral Steroids. Plasma exchange. It has been 2 years now with no Hospital stays. All treatment was at the Philadelphia VA and U of Penn. Almost 10 million dollars. Much rehab to walk and talk. Have the number for the Neurologist to send the Pennstar Heliocopter. Not work for a local hospital. Now back to working 36 hours a week in my restoration shop. I will be 80 in may.

Some go years to get a diagnosis. Had mine in 36 hours. You need an acetylcholine receptor test. (blood test) For sure a Neurologist. Sooner is better.

I only have ocular MG, and I was taking mestinon when I started to have a symptom, but my neurologist said I should take it on a schedule.. I've switched, and that seems to help avoid issues.
Recently, I fainted when I was in a very warm area for an extended period of time and stressed as I was in a hospital with my brother who was getting his first chemo treatment. I believe this is one of the effects of Myasthenia gravis -does anybody else have issues with heat?

That is how my 0MG started and luckily, I happen to have an appointment with an eye doctor, who recognized the symptom and sent me for the blood test. I was shocked when I was positive for Myasthenia gravis. With a low-dose of prednisone and the Mestinon three times a day I am usually symptom-free, unless hit by stress then I can have some double vision.

Savvyme1…Blood test was necessary to diagnose the MG. I have had Ocular Myasthenia Gravis (OMG) 4 years now. 6 months ago finally went to Mayo. 90 mg Mestinon four times a day was the key. It has helped with the Ptosis in my one eye lid. After 4 years …and two surgeries to lift it, a neurologist at Mayo, Dr Madigan became my hero. Wanted me to use Mestinon on a strict regimen. Also Prescribed Glycopyrrolate to help minimize some of the diarrhea Pryidosigmine (Mestinon genetic) can cause.

I was diagnosed with generalized MG 15 years ago and definitely have issues with heat. The summers here in Florida are a big challenge for me. I keep lots of ice on hand, try to keep the thermostat around 74 to save on electricity and try to swim in the cooler hours. Sometimes just going from the car to my front door causes me to overheat. I lie down with an ice pack on my neck. It may take me a few hours to recover. Best wishes for handling mg.

We enjoy Sarasota-rent a place- for the month of March. Not too hot then, but I jump in the gulf if I get feeling warm. I am a Michigander so cool water not an issue. Recently was hospitalized -after I fainted from heat and fell. The room I was in at a Detroit hospital was 77° ( system malfunctioning) not good for me but they gave me ice packs which I kept around my neck and I was OK. Thanks for your response. I sympathize with your issues enduring a Fla summer. Must be rough.

Thanks so much for all of the important and useful info.
You have encouraged me.