Have you been to a neuromuscular specialist at a big teaching hospital or an MDA clinic? I think I would still be spinning my wheels if I went to a local neurologist, most of whom have never seen an MG patient because it is so rare. If you are close to one of the Mayo clinics, Cleveland Clinic or John Hopkins, a lot of MGers have gone there and have had good results. I know it is hard, but do try to persist. MG not properly diagnosed and treated can be very risky.

kathie

Did they start you on any meds yet? Did you get the results of the SFemg? The process is very slow for diagnosis, I share your frustration. I am 6 months after diagnosis, my MG is still not stable in fact it is worse. I have not not found a therapeutic med strategy.

I still think thymectomy stats suggests thymectomy is the best route and hope to have one soon. My next neuro visit is in 3 weeks. Did they do a scan of your thymus. Often MGers have hyperplasia or enlargement even if they do not find a nodule. Stats show most MGer have a benefit from a thymectomy. Also make sure they test your thyroid. A lot of Mgers have thyroid and MG and they make each other worse.

kathie

Hi Kathie - yes, I finally got yo see a neuromuscular specialist at a teaching hospital, I am in the Uk but he takes national referrals for suspected MG so hopefully I got to the right place (I Pray that I have!) I am 10 days into an agonizing 2-3 month wait for my nerve/muscle tests and just hope he was exaggerating the waiting list! Haha!! I'm still not getting any medication, he said that he didn't want to prescribe without confirming MG due to the side effects and risks the medication has - which I understand. I had a chest x-ray with my previous neuro which was clear but I don't know how accurate they are for monitoring the thymus compared to CT and MRI scans??

I am sorry you are still struggling, it's just not fair is it?! You finally get a diagnosis for the meds not to work?! I have read good things about Thymectomy too but operations are scary! I hope you get what you need to feel better very soon - 3 weeks is a long time to wait for your next appointment when you are waiting and needing help! Will be keeping everything crossed for you!

They told me there would be a 8 month wait for the SFemg. As my symptoms got worse and I started falling, I kept calling the doctor and the SFEMG people. They bumped up my SFEMG to the next month and the doctor put me on mestinon once I started falling. If I were you, I would keep calling, very politely, and tell them about your concern of the progress of your symptoms and that you would take the first cancellation at a moments notice. That worked for me.

Good luck
kathie