Hi Kent , thank you for sharing. I never got a wrong diagnosis like you and have to go through steroid meds . Sorry for that. But I relate with you about exercise , not getting clear information about whether you should or shouldn’t. I am 20 years into IBM and still walking around my house with crutches but very carefully . also I use an electric chair if I want to get out of my house.I have found a transit bus that will pick me up and bring me home when I need to rely on myself to get to appointments.the chair saves me from the stress of falling.I go exercise in a warm pool three days a week to build up the muscles that I still have.my core is getting strong which helps me maneuver better
Myositis complications in sequence are- 1.Back pain(Can not walk) 2.Right leg doesn't work 3.Right hand doesn't work 4.Swallowing problems(Even fluids) After IVIG injection 5.Pneumonia starts 6.Difficulty in respiration 7.CO2 level going up, oxygen level down to 50-85 percent 8.WBC level goes tooo high 9.Unstable mental health 10.Death I have lost my mother in less than 4 months.
Hi Kent , thank you for sharing. I never got a wrong diagnosis like you and have to go through steroid meds . Sorry for that. But I relate with you about exercise , not getting clear information about whether you should or shouldn’t. I am 20 years into IBM and still walking around my house with crutches but very carefully . also I use an electric chair if I want to get out of my house.I have found a transit bus that will pick me up and bring me home when I need to rely on myself to get to appointments.the chair saves me from the stress of falling.I go exercise in a warm pool three days a week to build up the muscles that I still have.my core is getting strong which helps me maneuver better
You are so awesome Ronda
Myositis complications in sequence are-
1.Back pain(Can not walk)
2.Right leg doesn't work
3.Right hand doesn't work
4.Swallowing problems(Even fluids)
After IVIG injection
5.Pneumonia starts
6.Difficulty in respiration
7.CO2 level going up, oxygen level down to 50-85 percent
8.WBC level goes tooo high
9.Unstable mental health
10.Death
I have lost my mother in less than 4
months.
When you are out for anything and you need to sit ,how do you prepare? I can’t get out of a low seat
Hi, I don’t feel anything is better with me. I need a doctor so help me please.
Are There any myositis chapters In Northern Ohio
I have IBM, speech therapy has been very helpful for me