I just joined this site so I could talk to you. Never posted on a blog before.
You mentioned Shands in Gainesville. I live in Orange Park near Jacksonville and am being treated at the Mayo clinic. I tried to join the Jax MGFA support group but never got a reply to my emails. They must be inactive. My MG has really acted up this week end and my sleep schedule is all out of whack so I started surfing to see what I could find. It's nice to meet someone closer to home.
I have MuSK antibody MG. I also had problems with my first neurologist. It was more his office than him. My tensilon tests were negative so they didn't call me back in and the MG generalized. He got mad that I didn't see him right after the test but I told him his assistant told me to go home since the test was negative. I got worse, went back, and he said it had spread too far and he couldn't help me any more. That was over a year ago. Bottom line is I'm going to Mayo now, but this is a wierd disease isn't it? You never have a "good" day. It's just that some days are less worse than others. Sorry to be negative.
About the celcept. I don't know what that is. I'm on prednisone and azathioprine and get IVIG every two weeks. My neuro says it will take 6 months to a year for the azathio. to kick in. Sounds similar to your celcept. I've written too much and will sign off and see if this entry takes. Good luck to you and God bless.
Quote:
Originally Posted by xrpodn
I have had MG since March 2007. The 1st neurologist didn't have a chance
since I was angry with the fact that I had MG. After trying mestinon,
prednisone and azathioprine over a 3 week span, I advised the neurologist that I was tired of being a guinea pig, and I was not going to try anything
else. He advised me that he no longer wanted to be my doctor. Of course I was my worst enemy at this time. I stopped taking anything, and went into crises and spent 2 weeks on a ventilator, ane another week in the hospital.
I learned to accept the fact that I had MG, thus the 2nd neurologist had a better chance. We settled on mestinon (30 mg 2x daily) and prednisone
(20 mg daily) All went well for about 2 years.
At that time he stopped being able to practice at the hospital.
I went to a 3rd neorologist. She tried stopping prednisone, and go to
azathioprine. I discovered that she didn't have hospital priviledged.
I never tried her suggestion.
The 4th neurologist started out good. He sent me to Shands at the
University of Florida. They only confirmed that I had Mg. Since then (2years)
everything well with only 5mg prednisone every other day and 30mg
mestinon 3 x daily. 3 months ago I started having weakness in chewing and
neck muscles.
At that time he upped the prednisone to 20 mg 3 x daily along with mestinon
60 mg 3 x daily, and started me on cellcept generic 250 mg 2 times daily.
After 2 weeks, he increased to 500 mg 2 x daily.
He advised me that I would probably develop osteprosis. He has indicated that it will be his way only. I want to be able have some input, however due
to the 1st bad experience, I don't want to have another crisis.
The way I understand cellcept is that it suppresses your imune system, thus
making you secceptable to infections and many other side effects.
As I read many posts on this site, I see that it can take up to 6 months for
cellcept to work. Has anyone noticed a great Improvement anywhere up to
the 6 month time, or has anything gotten worse?
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