Adult Muscular Dystrophy

[mommasita]

Does anyone know of anyone who was diagnosed as an adult? And if so, why type they were diagnosed with.

Thanks in advance.

 

[WDWDancer]

I am currently going through diagnosis...right now they are 95% sure that it is a metabolic form. I had an EMG that I failed and showed degeneration in my upper body (neck/arms) a week ago and they have ordered a muscle biopsy to confirm.

I am 25 and had noticed exercise intolerance, extreme fatigue, and during my routine bloodwork for thyroid issues had elevated CK levels which started me down this path to diagnosis.

 

[kato0627]

My sister was diagnosed at age 28 with FSH Dystrophy. I really do not remember what prompted her to begin dx. I think she had lower muscle weakness. She is now 47. Good luck to you. Let us know what happens.

 

[bellanotte10]

prob not what you want to hear, but he's a rare case. My father (he's 66) has had muscular problems his entire life, starting with a noticeble shorter leg since birth. From there he's experienced muscle necropsy etc. After everything came back negative they finally figured out at 65 that he has a type of Muscular dystrophy. Downside? His doctor said its a form that might not have been discovered yet. His case has been in studies all over the country and they still can't identify it.

I bring this up not to scare you (not my intention and I REALLY hope you aren't like him because he's in a lot of pain) but to give you warning that there are a lot of different types apparently. Let us know how it goes!

 

[diznee25]

Yes, the severity of Muscular Dystrophy varies from person to person. I am currently seeing a neurologist at John Hopkins in Baltimore for muscular weakness. She has determined that I have a degenerative muscular disease. My symptoms have slowly progressed since I was 12 years old. However, the progression has gotten much worse in the past year. To the point where I am on medical leave from my job, and some daily tasks are very difficult for me to do.

I am having genetic testing done for Myotonic Muscular Dystrophy Type 1. Should be getting a call from John Hopkins tomorrow with the results....I'm very anxious!

diznee25