myotonic muscular dystrophy

my story.

Category:

Education

Tags:

• Movie
• on
• 2011
• 03
• 15
• at
• 15
• 50

[scanoe420]

Thank you so much. I too have MMD I had symptoms since I was 10yo I have lived with pain and doctors unable to diagnose the cause until two years ago I am now 45. my symptoms have progressed to the point where i live with some degree of pain every day. I understand everything you talked about in this video. The biggest thing we need is support I am 6'4" tall and built like a lumberjack but the pain and exhaustion can reduce me to a sobbing pile of meat. I'd like to help please contact.

[racehorse87]

@danlevm1 I can assure you that there are people working on treatments for myotonic dystrophy. I have actually just finished working in a lab whose fundamental goal is to develop the knowledge required for an effective treatment.

[marquiess]

@RockinTigereye Was that me you were referring to or the video poster? If it was me then I am sorry for not replying earlier.

[UUBE2]

Hi,

I liked your video. You show a lot of courage,... don't give up.

God Bless You. 

[MrCantletgo]

After all this time struggling, I started taking Mexiletine and my symtoms are hardly noticable. I feel like I won the lottery! Seriously... I thought my life was over.

Now I'm working to rehabilitate my body and managing issues like my diabetes, etc. Thanks MDA for helping me out!

[MrCantletgo]

Thanks for posting this video. I've had MMD since about the age of 11. I managed quite well for most of my life until it started getting progressively worse the last few years. It didn't help that I was misdiagnosed (long story) 10 years ago. My life was being undermined by MMD. I shuttered my business, isolated myself, and fell into a deep depression. My new primary physician (I carry a suitcase of health issues too) referred me to a neurologist and I realized that I had MMD.

[danlevm1]

My girlfriend has this....she is 24 and her hands are weak, her neck it weak and her eyelids are weak.... she is tired all the time......she has the mild form .... how fast does this progress? and are they working a cure?

[RockinTigereye]

Hi, I sent you a message with contact info. Please get back to me when you get a chance. Great attitude. :)

[marquiess]

I feel for you. I have had my MMD since I was 15. I am 44 now and I am honestly tired of it. But you only get one chance and I try to make the most of it. Miss playing with my son as he is growing up.

An awesome story. I have had shirts printed up that say exactly what you were talking about. "Not all disabilities are obvious!"

Thanks for taking time to inform others.

[MsDonnie513]

I noticed one person disliked this video. I don't know what their situation might be but how can you not like the knowledge that this girl is sending out. I have a granddaughter with MD1. We knew before she was born and you would not believe how many obstetricians knew nothing about it nor did they offer to research. She went from doctor to doctor and no one wanted to deliver this baby. This was the year 2000! It's too bad it's the patients who have to the information out there for others