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Old 04-09-2011, 03:26 PM   #16
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Re: Possible MD?

Hi Rira

I have to say I understand fully how you feel having been diagnosed with this type of condition, its a real bummer. I have been having similar thoughts about meeting someone and having a family etc. I'm only 22 myself and the diagnosis came as a comlplete shock. I also find it hard to see someone wanting to be with me having MD and a serious heart condition, I feel like damaged goods. But I guess we got to hope. I wish I could give you some more useful information, but I hope in knowing that others have similar feelings will make you feel less isolated and alone.

Regards
Gerry!

 
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Old 05-19-2011, 08:18 AM   #17
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Re: Possible MD?

Hi all

Mystery Solved!

I got the results of the genetic testing and the muscle biopsy. It looks like I have beckers muscular dystrophy. The biopsy supports this. The genetic testing indicates that I have an in frame deletion of exons 45-47 located in the dystrophin gene.

I'm being referred to a physio and a lung specialist for evaluation. Hopefully will know where to go from here.

Gerry!

 
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Old 05-19-2011, 11:05 AM   #18
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Re: Possible MD?

Hey Gerry,

I'm really glad you have at least found out some answers and received a diagnosis. That's the first huge hurdle in any case of MD.

My definitive diagnosis is still eluding my doctors and me. My clinical diagnosis is MD (because I can't walk or do anything). My muscle biopsy shows damaged shriveled up muscles cells and my EMG shows muscle malfunction. So.....I do have MD but we don't know what kind. It could be a mutation or one of the many types that still have no genetic test.

I'm sorry you have MD but it's great that you have a diagnosis of exactly which kind. Awesome! Thanks for keeping us posted. Good luck with the rest of your testing and please keep in touch!

Mark

 
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Old 05-19-2011, 02:34 PM   #19
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Re: Possible MD?

Hi Mark

I appreciate your comments and thoughts. It should hopefully prove useful for me in the future. Its unfortunate that you have never been able to achieve a proper diagnosis. These things can be complex and very complicated, and they vary from person to person. All I can say is I hope everything goes well for you. You have been a wealth of information and most importantly you are very welcoming. It means a lot, I'll be sticking around here. Its good to know others who have similar life experiences. Its very useful.

Regards
Gerry

 
Old 05-19-2011, 06:00 PM   #20
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Re: Possible MD?

Rira
A few years ago I had to use a wheelchair for quite sometime due to a bad leg injury. What really helped me out was using a motorized one. It helped me be more independent, and not rely on someone to push me around. I could not push myself due to having injured my hands also.

My legs are now getting bad again, and I have been told I have MD. I am waiting for all the test results to come back to be sure. Facing the possibility of using a wheelchair again I will try and get a motorized one even if it is a cheap one. Perhaps you will be able to get one.

Your English is very good! What part of Germany do you live in? I visited Kraiburg, Munich and a small Italian Village in the Black Forest area a few years ago. Germany is very pretty

Terry

Last edited by Greetings; 05-19-2011 at 06:04 PM. Reason: To put name of person whom I was replying to in my reply

 
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