Bear with me, winic1. I would like you to really hear what I'm saying. I'm not putting you down, but trying to help you out.

You began with a prejudice of your own. There are no good doctors around here. Maybe there are! Maybe you just haven't met one yet. Give them a chance.

Maybe the new doctor will treat you poorly, maybe not. What makes the difference? YOU!!!

Be calm. Try not to be combative at all (no offense). Write down your symptoms. Write down when you first had glasses. Having anything in black and white makes for an official document. Treat the doctor with respect. Heck, even compliment them (aka their ego). Don't talk over them. Ask for time to tell them how your body is doing (not how you feel, for that has nothing to do with medical facts). Stick to the facts. Tell them how whatever is going on is adversely affecting your life, what you are able/unable to do during the day/week.

And don't say that you have MG!!! I know, sounds silly. Allow the doctor to be the authority (since most can't handle a patient knowing something before they do).

And if they end up being someone who isn't nice, well, you can't change anyone's personality. But what you can do is ask them what disease is fatigable and responds to Mestinon other than MG, CMS, or LEMS!

Let the past stay in the past. Don't argue over any of it. Pretend none of it even happened!!! I'm serious. Try to be very reasoned and matter-of-fact. And men often see tears as weakness. Stupid, I know. Then neuros think that we are just basket cases instead of living through true physical suffering!

I have been through more than most when it comes to egos of neurologists. It is truly amazing how they so quickly interject mood or feelings or other nonsense into a scientific discussion, especially with women (yes, some men, too).

To counter that, you can ask if they see ptosis. Can they feel the weakness in your limbs? Why would a drug meant only for someone with low acetylcholine work so well? A placebo effect won't keep someone from the hospital due to a MG crisis! Ask them what testing can be done. Bring up the MuSK, LRP4, etc. Ask for an action plan. Tell them that you'd rather not die from a lack of treatment. Say everything in a very kind way. You can always scream your head off after you leave the clinic!

BTW, have you seen a pulmonologist to have an evaluation of breathing? If not, try to have that done. MIP and MEP are specific tests that show if there is a neuromuscular basis for poor breathing.

We all know how hard this is, especially when you run into egos, senility, stubbornness, and ineffective doctoring. So make this appointment count. Be the very best you can be, without making the doctor your enemy. I don't know you, so I have no idea how you are in an appt. All I can do is give you the best advice based upon my past experiences, which are extensive.

I WANT you to have a GREAT experience!!! And a diagnosis and treatment!


Annie