Yesterday was my 3rd visit with the dr from Northwestern. He found my slides from the deep muscle biopsy I had done 7 years ago. When he read them he said he could see how the conclusion was made that I had polymyosits. However, it was apparent to him that something else was going on. His diagnosis: limb-girdle muscular dystrophy! I am still reeling from this new diagnosis. I have all sorts of emotions going on. One thing that is bothering me greatly is being on all these meds for all these years, the possible long-term effects of them and it wasn't necessary. Quite honestly I am praying for confidence in his diagnosis. I sent an email to the dr. who did the emg back in October asking him if from what he found if he feels this is a possibility. I don't know if he will respond or give his opinion but I figured I'd give it a shot. All these years I have put my faith and confidence in the rheumy and have been trying to tell him for the past 2years that things were just not right. I always felt he was dismissing me at the end of my visits w/him. It wasn't until the pt suggested a new emg that things got moving. The only good coming out of this right now is coming off the prednisone, mtx and probably folic acid. This is considered to be genetic and from the info given to the new dr he feels I inherited this from my dad. I have 3 grandchildren and 3 daughters. I'm doing a lot of praying that this does not get passed on to any of them. Once again this is a lesson to be learned that we need to go w/our gut feelings and question the drs. If they are not willing to listen and discuss, find someone else. God bless all of you.
|