I am a reluctantly newly diagnosed, seronegative retired MD. The doctors have been reluctant, I have wanted to know what was going on. This is what I have learned over the past 30 years of symptomatology:

1. Doctors are human, don't we all know it. They like to see new patients in the morning when the doctor is fresh, but that is not the best time for us for diagnostic purposes, since we are too.

2. If you have eye troubles, try to see a neuro-opthamologist (when your eyes are tired). They see more people with myasthenia than most doctors and they don't have to worry about whether symptoms are the result of other organ systems i.e. heart and lung disease.

3. Doctors usual routine with new patients is "chief complaint" "present Illness" "medical and family history" "impression (differential diagnosis, hopefully)" Then there is the decision of testing and treatment. Make your chief complaint short and personal. ie : "I had to quit running marathons because I kept falling down" "It takes me four hours to do the dishes, because I have to stop and rest" "I'm scared to cross the street for fear I'll fall down or the light will change before I can make my feet move across" "I can't wink at the waiter without leering, because my eyelid won't open fast enough." Be ready with dates of notable symptoms, past efforts at diagnosis, and treatment failure. Also make that succint, The doctor will ask questions if more information is needed. The personal family history they are usually most interested in are heart/lung disease, kidney disease, allergies, diabetes, depression, arthritis. Sometimes neuromuscular diseases are left out in questionnaires--write them in. Unless it is a neuromuscular disease, don't bother with extended members of the family (anyone other than parents, children, siblings, and grandparents)--that is just a distraction and you want to get the routine over so there is time for questions.

4. Don't leave without a differential diagnosis. If it is "myasthenia or nothing", remind the doctor you are suffering and if it is not myasthenia what options do you have for the treatment of "nothing." (Hysteria and conversion reaction are treatable, too and certainly not "nothing.") Idiopathic anything just means the doctor doesn't know what is wrong-- it is not an acceptable diagnosis for an ongoing problem.

5. Doctors don't like to be wrong even more than most people since being wrong carries more repercussions. You may have to be tactful as well as assertive to get what you need. Although some doctors don't like second opinions, most good ones will welcome the input, so if there are problems, ask if there is someone you can see that may shed some more light on your difficulties.

6. If you are seronegative and symptom positive (for whatever the presumed diagnosis), ask if a trial of medication might be helpful in deciding what your problem is. It is sad to have experienced all the expensive tests over and over again when a 50 cent pill told the tale immediately.

7. I am unaware of any other illness with weakness that comes on unexpectedly and responds to rest and/or Mestinon. Ask.

8. Write down what you used to do and want to do now that symptoms preclude--reading problems, sitting at the table in the evening without props, sleep difficulties, etc. Specifics noted by family and friends and demonstrable findings such as calluses in odd places from propping yourself to do activities may help doctors diagnose our rare disease. This might be more useful in a letter if you have not been given adequate time for discussion.

I would like to know if those who are seronegative seem to have a different course of illness. For my father and myself, diagnosis seemed difficult because we never stopped trying to do strenuous activies most people our age avoid. We also seemed to have little warning about onset of weakness.

Thanks to all for being here for one another, I hope this is helpful.

B.