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Old 04-04-2007, 09:32 AM   #1
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Join Date: Apr 2007
Location: miramar,fl
Posts: 15
Michelle71 HB User
Polymiositis

I am a 35 yr old mother of 2. My symptons started in 2005 with tripping, followed by difficulty walking up stairs, then difficulty standing up and walking, now i can't walk at all and my arms and hands are weak. i've had 3 emg's, 2 muscle biopsy's, on 80 mg of predinsone now for 4 1/2 months, done the ivig, which caused me to get chemical menengitis the second time. I noticed also that when they started to take me off the prednisone i felt stronger a little, thought it was just me. Emotionally, this is killing me, i feel trapped inside myself. i was very active with my girls and now stuck. Going to Cleveland Clinic in Ohio for more tests and another opinion in a couple of weeks.

I am curious as to what kind of transportion everyone is using. I am looking into a lift that attaches to the inside of my truck on the passenger side, but have been told getting a van is better. Just doesn't feel that safe being in the wheelchair in the vehicle. But at this point i can't stand being stuck in the house. Opions and advice are welcome.

 
Old 04-09-2007, 12:03 PM   #2
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Join Date: Jan 2007
Location: Pecos, TX, US
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issy07 HB User
Re: Polymiositis


Michelle71, I am so sorry to hear that you are having trouble getting around. I can sympathize with you. Though I have never been wheel chair bound, I too have felt the frustration of being immobile (did I spell that right?). I am 29 and a mother of 2 also. I have had Dermatomyositis for 5 years. I have experienced the tripping, the weakness and all the frustration. I have done the IVIG, the prednisone, Methotrexate, imuran, remicaid, etc.. Before I was diagnosed with the disease I too was very active. I am prior military so I was used to a very active and fit lifesyle. I was running 3 miles 5 days a week, then I started feeling achiness and weakness. Before I knew it, I couldn't pick up my 1 year old or get out of a chair. I finally got the diagnosis in November of 2001. I went on high doses of prednisone and after what seemed like an eternity, I started getting stronger. Now I am weak again, but not anywhere near where I was. I have a 1 year old and my pregnancy with her took a lot out of me. After the delivery I just got weaker. Now that she is 14 months, I am finally able to pick her up and bather her on my own. I am able to go outside and play with my 6 year old. By no means am I 100%, but I am better. This disease has made me have a lot more faith and I have learned that we cannot take anything for granted. I will keep you in my thoughts and prayers as well as your girls and family. Had it not been for my family and kids I think I would have let this disease get the best of me. I know I will always have DM but it will not have me. Hang in there I promise it does get better.

 
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