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Christer, I was diagnosed at 67 with diplopia and tsosis. That was the extent of my symptoms for about 4 years. Some people never go beyond these ocular symptoms. However most people do. The extent to which they get generalized symptoms varies highly.
Something I have noticed in my research and interchange with with other myasthenia patients is that this is a highly individualized disease. I encourage you to read all of the forum topics and contributions. You will get some insight into how unique each person’s experience is.
Nonetheless, I feel comfortable telling you some things I have learned.
MG is not predictable. Is has its ups and downs. You will eventually find your own range. I for one am almost asymptomatic as long as I take my meds, in my case mestinon (pyridostigmine) cellcept, small dose prednisone and biweekly Soliris. Don’t worry about anticipating spells medically; mestinon works almost immediately and is the only thing that directly addresses symptoms. You should do some research on the role of acetylcholine in MG and how the enemy is the autoimmune antibodies that attack the acetylcholine receptors in the nerve synapses.
You were extremely lucky to have so quickly encountered someone who recognized your symptoms. Accounts abound of diagnoses delayed months, even years by consecutive medical professionals with no familiarity with the disease.
Depending on the course of your disease, you may be advised to take immunosuppressants, to inhibit the rogue antibodies in your blood. Steroids act quickly but with significant side effects that make a less desirable long term solution. Imuran and cellcept are common additives or alternatives, but are long arc tools, often taking months to kick in. I have not found mestinon to be very helpful for ocular symptoms, every one is different. You might never need anything else. But my reading has led me to believe that less than a quarter of patients stay at the ocular stage.
Don’t work or exercise until you are exhausted. Know your limits. There is no value in wearing yourself out. Myasthenia is not so much about weakness as it is about fatigue.
Find a neurologist with experience with myasthenia who has an open mind.
Try to avoid stress. Good luck with that.
Good sleep and timely rest are good medicine.
There’s a lot of good information here, and a collective centuries of experience.
See you around!
Doug