Well, I received some good news today One of the neurologist I called for an appointment had a cancellation, the neuro that has another MG patient. And I have an appointment tomorrow. I am so relieved. I know this is just the first step in another endless line of tests, but at least, maybe they can put me on medication so I feel better. It would be good just to get out of this state of limbo. I will let you know how I make out. I value everyone's input.
Wish me luck,
kathie

Oh great news. I wish the best for you.
Mike

Good luck, i found i had to be very proactive in getting doctor to start, modify treatment so be sure to ask. By the way be prepared you will probably still be in limbo reegardless of what happens tomorrow. This is a complicated illness and everybody is different. When i first started reading about it in addition to perhaps overstating how many people lead "normal" lives, i think the information out there understates how long it takes to get under control. True i had read meds could take up to a year to be effective but i had not realized that for me at least, no meds were going to make me feel "normal" anytime quick so now i just take each day as it is and try to go with it.

Again good luck!

Ditto that answer

Kathie, I hope it goes well. I can't believe I'm saying this but try to let the neuro take the lead. We patients shouldn't have to play these kinds of games but a lot of neuros tend to be on the arrogant side. If you tell them you have MG, they might say to themselves, "How dare she think she knows more than I do!"

Sorry but I had another appt. today with a doctor who couldn't handle patients daring to think for themselves, even if they're right. It's so sad. Aren't we on the same team?

I hope this neuro is nice, smart and helps you!!!

Annie

Good luck! And this quote is very true. We shouldn't, but in my experience me must. So keep that in mind.

You are so right Annie!!!!!! I had been contemplating using reverse psychology with a neuro. Just because it always works so well on doctors and fluctuating symptoms - that is also pretty sad in my view.

No advice from me just wishing you luck and may it be your turn this time, Kathie

Thank you all for your well wishes and suggestion. I am typing up my symptoms and onset on a list. I have copies of all my blood work and letter/notes from specialist. One of my letters is from a rheumotologist who says he suspects MG and not RA/SLE etc. So I will let the symptoms, droopy eye and all as well as the rheumotologist note take the lead. I cannot tell you how much your support has meant to me through this difficult time.kathie

Well, I cannot say that the neuro appointment went well. He looked at the list of test results and symptoms and said "I do not think it is MG". He did not do an EMG because of my history of RSD. He ordered a bunch of blood test, including antibodies for MG and antibodies for a bunch of other rare autoimmune diseases and B12 & folate. He is sending me for a test that is suppose to measure and evaluate the ptsosis and another for tinnitis for the unsteady gait. No medicines because he does not think it is MG.

So now I am in Limbo Level 2. If my antibodies do not come back positive and he does not treat something, I am going down to Jefferson Univ hospital. The whole exam took 15 minutes. He tested my muscle strength once on each limb and did not do repetative tests to see muscle fatigue.

I am slightly depressed and very frustrated. Any suggestions on what to do?
thanks,
kathie

It sounds like a typical neuro visit to me...........