Hi Becky,
Welcome to the group!
Your symptoms do sound like MG. And that you respond to Mestinon (pyridostigmine) makes it more likely as it is almost only useful for MG. I found that if I took 60 mg about every 3-4 hours I could function when MG was at the worst, but it didn't fix my eyes. I had to take immunes suppression (I started with prednisone) to slow down the production of bad antibodies - and it took a few months of high doses to get rid of the MG symptoms.

My own first diagnosis was by the icepack test. My eye specialist put an icepack on my eyes for a few minutes and the eyelid droop went away for a time (minutes). He said that meant it was 85% likely my ptosis was from MG. A positive blood test confirmed it. So, unlike many folks, my diagnosis was quick and easy.

My own MG progressed rapidly form eye (double vision and ptosis) to head (chewing, talking, neck weakness) to whole body and breathing problems and hospitilization in a month.

Some folks have a much more difficult time getting a diagnosis as there are many levels and varieties of antibodies to test for. You can have MuSK antibodies, ACHR antibodies, and a few other types and most of the time the only test you get is for ACHR. You can also be sero-negative (blood tests don't show MG) and still have it.

Generally the single fiber emg test is most sensitive and you need to have an experienced person do that test and interpret it as the findings may be suble.

There are other diseases that have somewhat the same symptoms, and doctors spend a lot of time trying to pin down the right diagnosis -- much too long for those of us with the problems! Unlike 20 years ago when diagnosis was mostly based on symptoms and improvement with treatment, nowadays positive tests are needed before most neuros will diagnose MG.

Something like 85% of folks with MG get diagnosis, treatment and improve to live good lives. MG is chronic, and for most folks requires ongoing treatment that is a balancing act between immune suppression, side effects of the immune suppressing drug, and functionality. Treatment is generally enough suppression to get rid of most of the symptoms, some mestinon to aid the day-to-day functioning and adjusting to life at a slightly to moderately lower level. However there are about 15^ of folks who have MG that doesn't respond well to standard immune suppressing treatments and they have much more difficult lives, and often use IVIG infusions monthly or blood filtering to get by. Anothe 15% are in remission at any time and don't need to take medication until MG returns. (I am in a 5 year remission right now).

Life can be pretty normal for most folks with MG after the first year. It often takes us that long to get the diagnosis, get control with immune suppression, figure out the ongoing treatment and then go into the balance of med and symptoms. If you think of it like type 1 diabetes -- it is with you but controllable and life can be good.
During year 1 you may not be able to do as much physically. I wasn't although I got though the hardest months with lots of mestinon. Then prednisone put MG at bay, and the next step was trying to figure out the minimum level of prednisone I could get by with (many months) and finally when prednisone side effects were difficult, going through a switch to an alternate immune suppression drug and getting the right level there. Along the way, mh MG went into remission, freeing me from all of that. Remissions may last for months, years or decades or not!

Good Luck,
Russ

Hi Becky

sorry to hear your problems but do not despair as it is controlable.
the first thing that you need is to have a neuro that you can have a extended conversation and you should have the tensilon test for mg.

it is the only tru test, doctors dont like to use it because it is expensive and most of them are controled by insurance companies, whom whant to keep rhe cost down,

in the meanwhile their is 3 things very important that will hep you to control mg. they are NO EXCERTION, NO STRESS as these 2 thing have the tendency to send people in a wild roller coaster ride,

and this is very detrimental to all of us, the 3rd, thing is good control tru your meds, that is why it is importand you extented conversation with your neuro.

this where you have to take control of your desease, as all will be trials and error, but we are the only ones whom can control this desease

you are in the mesical fiels so you know what you will ahve to do, also very importand is the life standart change.

as for exersises the best is 45minutes dayli slow to brisk walk, swimming as long you do not exert your self

remember selfcontrol is a must

each of us are and react differently to treatment, but by following the basics, and using lots of logic and commun sence this can be accomplished whit minimal efforts.
i myself have the worst classification of mg, 79yrs. old, just came out of my worst relapse which took alot of me, but doing just fine now, so if i can do it any body can do it too

best of luck (fighter)

Thank you guys for all of the helpful information. Today my neurologist ordered more blood work and the single fiber EMG. When I asked about the Tensilon test he said the test is no longer performed because it is unsafe. I’m beginning to feel like the best specialists for this condition are the people who have it. So again, I’m thankful for this group where we can share experiences!
Russ- good to hear you are in remission and Fighter-happy to hear you're doing better after your relapse.

hello Becky

thanks for your kind words, . i just want you to know that you made the best statment, seeing in years

"I'am beginning to feel like the best specialits for this condition, are the people who have it".

that is a statment that all can thrust, sharing our experience so that every body can take a bit here and there is in fact the best that one can experience

again best of Luck (fighter)