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My husband was first diagnosed with Parkinson's Disease, then later re-diagnosed with myotonic muscular dystrophy type 2 (more rare than type 1). Is anyone out there living with MMD 2 ?? I need someone to talk to!
Pain Back pain Lyrica Muscular dystrophy Parkinson's disease Oxycontin
Sorry it took me so long to answer....we just kind of go day by day. Do you have a lot of pain and is walking, turning over in bed, etc. difficult for you? Are you on any pain medication and does it help? We've tried oxycontin, lyrica, and who knows what else, but nothing helps the back pain. My husband also has Parkinson's, so it's sometimes hard to know which symptoms come from which disease. He also has trouble getting up even one step or carrying anything heavy in his hand while walking. It seems his muscles are just "disappearing". And he has much difficulty with eating and swallowing. Thanks for your reply - hope to hear back from you. Pam
Our journey has been long and we are still without a definite diagnosis after 5 years. The neurologist at OHSU (Oregon Health & Sciences Univ) told us last July that he was going to order testing to either confirm or clear MDD-2 and we still have no answers, even though I've made several phone calls. It's so very frustrating! How long did it take for your diagnosis? My husband is having increasing difficulty walking, even with a cane, and is very hunched over at all times. He says his back hurts so much that he can't straighten up. Have you had that problem? What other symptoms are you showing?
I also was diagnosed with MMD type 2 in April 07.
I will be happy to talk to you and try to answer
questions that I could.
sami2
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