Thank you for your encouragement. Have you ever watched the move "Rain Maker" with Matt Dameon? (sp?) that movie just about sums it up. I did talk to my insurance company again yesterday and they said that my Docs can appeal. But that is up to the Dr to do all of that, I can't.

Thanks

Hey Carrie

just wanted you to know that Im thinking of you, I know thats not much, but as I live in Australia, I cant give you any advice, sorry.

On a recent trip to hospital for IVIG infusions for a day, I met a lady with a 20year old son with severe physical and mental handicaps with lots of other problems, we talked alot, and I said to her, Ive decided that any there should be a new rule in life, that each person can only have 2 health problems in their lifetime, and only one can be complicated!!!!(the other can be the flu or a broken arm or leg) I know so many people with so many awful problems it just aint fair

I hope you find some nice people to help you out in your insurance/medical problems, there are some out there, they are just very hard to find.
take care
redtail

Time to give the doc's office chocolates and make friends with the office manager... oh man... I have written the letters and given it to them to make their lives easier! If they just have to put it on their letterhead and sign it, they tend to do it faster... Cajole, look sick, (hah - like that is hard!) but the hard part sometimes is the office staff... some are nice, some are um, not.

I got my DR notes from the other day and it says that I can't be treated there. So that is a step in the right direction.

just getting on this forum for the first time, but had to write to offer my support. I was lucky enough to be diagnosed by a local neurologist who recommended that I see Dr. Drachman at Johns Hopkins. I have been treated by Dr. Drachman since being diagnosed with MG with thymoma in Nov 05.

I too have young kids so understand your concerns, needs etc. I was operated on in March 06. Since I was having sleep apnea at that point (along with major weakness, speech problems, everything else), Dr. Drachman made sure I was in the ICU right after the operation. The ICU nurses at Hopkins are fantastic. I know I'm one of the lucky ones but am now basically symptom free post thymectomy and and beginning to reduce my Mestinon and Cellcept.


Dr. Drachman is great and very caring - and careful. He is definitely the best person to take care of you especially with all your other problems, and is the "father" of myasthenia research. It's a priviledge to be treated by him, and Hopkins itself is at the forefront of this and other research. You didn't mention where you live, and I know costs are a consideration. Dr. visits are high - especially for an initial consult - but insurance may cover you (I hope), and I think it would be worthwhile. Call 410-955-5406 and ask to set up an appt with Dr. Drachman (Mondays only).

Best of luck,
Lisa

Well a lot has happened since I posted. U of M is going to be doing the surgery on Dec 6th. I am starting Plasmapheresis this week.

Has anybody else had the transsternal Thymectomy??

Transsternal's the big split right?? Then that would be moi...
Had mine in 1981 at age 14.