I too was put on mestinon only to start. The theory is that if improvement is noted then it’s definitely MG. The change on mestinon was dramatic at the beginning. It did give me some nasty gastrointestinal issues till I got used to it. First few days were rough. Two months later after I was seen by a MDA Neuro at one of their clinics, the docs started immunosuppressants: Prednisone to start and then imuran replaced by cellcept later.
Glad the telemedicine worked out!

Thanks for the reply, Speechie! So I have seen elsewhere that you are seronegative... is your response to Mestinon the way they finally determined you have MG?

I have read about the gastrointestinal side effects with Mestinon but I am crossing my fingers I can avoid them or they won't be too bad. Frankly, if Mestinon can relieve my muscle fatigue so I can have a decent shower without taking a break it will be worth it.

Pretty much the mestinon clinched the initial diagnosis. Following that, I went to a MDA clinic (best muscle diagnostic place ever) where they did a complete work up repeating all the bloodwork my regular Neuro did as well as a full body EMG, Single Fiber EMG, and CT of thymus. My blood work continued negative and other mild testing “positives” were not exclusive to myasthenia but docs there agreed with original diagnosis and here I am 10 years later. My docs told me to stop taking mestinon 48 hours before EMG and full work up. This allows docs to see true function and not mestinon aided function. This meant (after 4 hour drive to get there) by the time MDA doctor saw me, I had ptosis, no voice and had trouble walking. I was very happy to get a second opinion and confirmation of diagnosis so I could be surer docs agreed on what I had.

Thanks for the reply, Speechie. I am really looking forward to starting Mestinon to see if it makes a difference, and glad to know you can stop it in order to have proper follow-up testing done (that isn't easy to do once you are taking prednisone).

I am not sure we have a MDA clinic in Canada, or if we do, how I would access it? But that is good to know.

Cheers,
Doug

Good you got started with treatment. Mestinon (pyridostigmine) is a quick in what it does. About 30 minutes after you take the pill (usually we take 60 mg) you will notice things are getting better and then that lasts for a few hours and you are back to before. I was started on 3 60-mg per day and that was not early enough as I ended up in the hospital with breathing problems At about one pill every 3-4 hours I could function, but I really didn't get better until about 4 months on prednisone and then at high doses
Some folks have an initial reaction to prednisone. So my neuro started me at 20mg per day and when after a couple of weeks I had not bad reaction, boosted it to 30, then 40 and finally 60 mg before MG really got better.
The problem with mestinon only is, if your MG is getting worse, it masks the symptoms and you can crash hard. Some folks do get by just on mestinon though. Complicated business trying to figure out what is going on
I was rather insistent I wanted rapid improvement rather than months and months so I was pretty pushy to get the prednisone started and dose high enough to get better. And I did.

Good Luck
Russ

https://muscle.ca/
Here’s the link to Canada’s site. It’s called MDC there lol. I did a quick look but unlike the UK and US sites, it doesn’t seem to have a way to look up clinics and locations but it does have contact information to ask questions. Might want to ask your doc about it also if you’re interested.
I agree with Rhanson that you have to be your own advocate. For myself, I’ve learned that it’s best to give the specialist first call and then push for something else if that doesn’t work. My own specialist wanted me to start plasmapheresis a couple years back but I thought I knew better and ended up on a ventilator. The reverse has also been the case. He wanted me to stay on imuran longer before I changed to cellcept and I pushed to come into office early so they could weigh me to show how much weight I lost from the vomiting. The only docs I start off telling what to do with my MG are the general practitioner / ER docs who can be somewhat clueless when it comes to rare diseases.
Everyone with MG can have different outcomes on meds so speaking plainly with specialist is vital. When I first started mestinon only, I didn’t wait till next appt. I called doc’s office to leave a message about how the medicine was working. Lol, I was so naive that I thought that was it. Take this medicine and all was fixed. I soon learned about the ups and downs of chronic disease. Communication with your specialist is very important. I know I can leave a message at the office and my doc or FNP call back within a few hours.

As a general rule I would agree on starting immunosuppressive meds ASAP but maybe not right now that the world is in the midst of a pandemic.

Thank you both Russ and Speechie for the replies. Great counsel from both of you and yes I think we all need to be as knowledgeable as possible about our condition and to be our best advocate.

And yes Speechie the thought had occurred to me about being on prednisone while corona is circulating is less than ideal.

My local pharmacy has not yet received (or maybe processed) my Rx but I hope to start Mestinon tomorrow (Thursday).

Cheers,
Doug

Doug, it is best to take the mestinon with food.

I’ll give an amen on the food!

Thank you for the tip and replies Nanosecond and Speechie! My local small-town pharmacy had to order in the Mestinon so I won't be able to start it until tomorrow afternoon--with a snack :D.

Speechie, I missed the link you sent but will def check it out. Thank you.

Cheers,
Doug

I live in a small town also. I would suggest you speak with them to keep it in stock. Very few people use mestinon and I had a few false starts making sure it was kept in stock. My pharmacy now makes a note to reorder. A couple of times in the beginning I had to wait a couple days for more to be shipped.