Hello my dear MG friends...

I have been mia for a while because my computer has spent several weeks being shipped back and forth to dell to be repaired.

I will begin with my meds update...I have been slowly declining over the past year. I am now up to 10-12 60mg mestinon, and 2 180mg timerelease. Still on about 5mg of pred, and just discontinued Imuran after 7 months with no improvement. I will be starting Cellcept in a day or two. I'm also still taking Vicoden and I'm also using Fentanyl patches for the pain. I have IVIG monthly, 2 days in a row. All of this and I'm hangin in there. On the days that I sit around the house and do dishes and make lunch for the kiddos, I'm pretty good (still need all the mestinon), but on days that I have an errand or I have to clean or go upstairs, that night and the next few days are hell. I have reached the dicision that when I see my new Dr (which I still have to find) I will demand they do a thourogh test into why I have so much pain. That I have to use those patches and vicoden is rediculous. I'm wondering if it is related to my MG or something else??? The first time I had my IVIG infusion, it was like a miracal...I had a month of almost normality and only needing about 4 mestinon quicke release plus my timespan, since that dose, the ivig is much less effective. During a period of 4 months that I did not recieve my infusions, I was so weak again I couldn't shower myself. So even tho I'm not getting the kind o benefits I once did, it is definately keeping me stable.

Now to my rant...I finally won my SSDI case!!! YAY! I had a court appearance yesterday, and actually broke down crying when I had to describe my symptoms. The "Medical Expert" they had on the phone to testify, was an internal medicine dr. He proceded to tell them that yes I DEFINATELY did meet the requirement according to their guidelines, but in his opinion I may be suffering from something else. He said that most people go into remission after Thymectomy, and especially with all of the medication I am using to fight my illness, I should be much healthier than I am. This made the judge ask if he thought I was lying about all the meds I take and not really taking them all to keep myself sick!!! He said no, I am most likely using my prescribed therapy appropriately, but with such a scary diagnosis on a young person, there may be 'psycological damage" that is keeping me ill. He also said that pain is not a part of MG, and most MG patients are well controlled, and live full, healthy normal lives. I wanted to reach through the phone and rip out his tongue. Let me insert here that I had my thymectomy when my baby was 5 weeks old, almost died twice because of that surgery, I have taken every medicine the drs have reccomended, and I didn't even apply for SSDI until I tried to go back to work and could not! So screw you idot medical expert and go back to med school you ***! Sorry...Anyway, I know being emotional and crying during the interview probably didnt help my case, but hello, I've been fighting these people for almost two years, I'm tired and weak, stressed out and they are asking my to explain in great detail how shitty my life has become. And even tho I difficulty speaking, the kept asking me to talk louder, and the judge yelled at me! The dr asked me to explaine how I was getting worse...I started by telling them how I have to keep upping my mestinon, and she said "we are asking you to tell us how you are getting worse, not about your medicine!" Obviously that is the easiest way for mg patients to explain...so I told her that without the mestinon I would not be able to move and would be in the hospital on a ventilator...and the fact that I am needing more and more to function is exactly why I am telling tham about it. She was so rude....so I did get it with the stipulation that I seek psycological help! I don't mind seeing a therapist, but I'm not f'n crazy...stupid *** government officials are the kind of people that make me a shut in now.
Thanks for reading and I'm sorry for all the misspelling, my brain seems to be losing cells daily.
I hope this finds you all strong and well!
Jessica