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Just In Case


Mary P
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I finally have a diagnosis that really tells me why I have so much muscle pain, fatigue and weakness. A cardiologist referred me to a Physiatrist who did muscle testing and then diagnosed neuromuscular disease. I now go to another physiatrist who'll do more testing and will hopefully be able to give a name to this disease and then prtovide follow-up treatment. Over the past 6 years I've become almost totally housebound but now look forward to a short walk without total exhaustion .

I almost cancelled out on this last appt, thinking, "No one has ever helped me in any way, so why should I think the physiatrist can help"? During 2 separate appts, a neurologist of movement disorders had asked me if I'd ever had muscle testing but did nothing when I told him "No". I guess this taught me, "Never give up". "This next doctor just might be the one who'll care and make a real effort to help". At any rate, I thought this info on the physiatrist might help even one more of you.

I haven't posted in a very long time because I've had no help since the diagnosis of automomic dysregulation in 2007. However, I do read your posts and comments posts to see how everyone else is doing as you search for help and wish you all the best in your search for answers. We all deserve to be believed and treated with respect.

Mary P

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Thank you for your concern and support, Naomi and Bren. To my son who does everthing for me, to the both of you, to all Dinet members and to the 2 doctors out of the 7 that I've seen, I offer a heartfelt 'each of you is a godsend'.

No, Naomi, the physiatrist I saw didn't have the equipment or computer programs which would have lead him to the next level of testing which would have indicated a cause for the neuromuscle disease. I have to see another physiatrist who can do this. Once this happens I can only pray that there will be help. I'm wondering had I been diagnosed even 2 years ago by the N of Movement Disorders, how much sooner and therefore better I could have been treated. My muscles are wasting away.

My Gp denied me the right to see a Rheumatologist last year and was angry when I insisted on seeing my cardiologist again. I can hardly wait to see her again this week because now she'll have to believe that I really do have a lot of problems with every kind of movement I make. I'll post again after I've seen the next physiatrist.

Mary P

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