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Hi.
I agree that anything new is exciting. I was previously diagnosed with Polymyositis & had a week long course of Intravenous Immunoglobulin as part of treatment. It didn't seem to affect my CPK levels - which I think was what they were looking for & I didn't notice any changes but then it was only a week & I was also on high dose Prednisolone which made me feel awful too!
I think it does no harm to have a bit of hope!
I have now been diagnosed with Miyoshi & am hoping to have this diagnosis confirmed at Newcastle, UK.
I am 37 with husband, 2 young children & a part-time job! Stairs & steps are now impossible for me & I don't really go anywhere on my own as I feel really unsteady on my feet. Getting out of chairs is also really difficult. I was a very active & sporty teenager, as so many of us seem to have been, so it takes time and positivity to adjust to each new challenge life brings. If you watch the TV news you'll see that there are so many people worse off than ourselves & I keep this in mind at all times!
I couldn't seem to sign in to Yahoo so I'm not sure if this email will reach anyone else but if it does & you want to email me I'd be pleased to chat!
Regards to all
Suzanne (from UK) suzannecroft@...
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