Thank you all for all your posts. They help me feel like I am no...

Hello Elizabeth,
I have the sister to your disease...Polymyositis. I know what you are going through. I was diagnosed last September. I spent 4 months in the hospital in varying stages due to misdiagnosis of meds (ie, steroids). My Rheumatoid doctor put me on 60 mg of Prednisone for two weeks then dropped it down dramatically. That was problem number one in that they didn't leave me on the steroids. So that was crash #1. Put me back in the hospital. Crash #2 came when I developed Dysphasia. Weight fell off me and I couldn'dt eat because I couldn't swallow. I was diagnosed with it by hospital staff and it was recommended that I be put on a feeding tube...that was ignored. I wound up in being sent home to die because "they couldn't figure it out". Finally wound up back in the hospital, had a trach performed. Still no feeding tube and at that point was down to 86 pounds. Finally got a feeding tube put in. Wound up being treated with huge amounts of steroids through IV treatment, then went to 60 mg a day. I couldn't walk, talk, sit up, or anything. It was horrible. Once I got the feeding tube and the right dosages of steroids to treat the disease, I started to recover. To make a long story short, I was in the hospital from September 2007 through December 2007. Wound up in a care facility through January 2008 and home finally in February. I am almost fully recovered EXCEPT for the fatigue. I still receive IVIG treatments, although those have gone to every couple of months. I had severe gastro problems from the Methotrexate, which I found out can be treated by taking enough folic acid to counter the affects of what Methotrexate does. I am not down to 5 mg of Prednisone and am hoping to eventually get off of it. I have about 15-20 extra pounds of fluid, all around my middle and it is very uncomfortable. I used to be very active and am trying to retain that once again, but it's hard. I try to walk every day somewhere and am thinking of joining a gym just to keep limber. I have the somewhat round face but it didn't quite blossom into the "moon" effect, thank Heavens. It's weird to go from 86 pounds to 145 in less then six months. I don't eat a lot because I usually feel full. When I do get hungry, it doesn't take much to make me feel full. I get thirsty but when I drink I feel totally bloated. I have been told by an RN to drink lots of water (8 glasses a day) and that will help with the fluid retention. Hard for me to do but am going to try to see if that will help pass some of the fluid.

Sorry this is so long...there is so much to say. If you wish to contact me my e-mail is:

lauraf2002@hotmail.com

I would love to hear from you...hear your story.

Laura