Sage13
Registered: 01/12/11
Posts: 1
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| | 01/12/11 at 03:43 PM | Reply with quote | #1 |
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 Hello Folks:
Would LOVE any advise! My father, uncles, aunts have past due to this disease. I was a GOOO Getter, lived a life of a lot of physical activity. I mean, I did it all.
In the last 1.5 years, I begn to fall down, have problem remembering stuff at work (not working now), lots of pain, falling down, extreme tired bla bla bla. I do not cook or clean. I applied for SSD and was turned down. I hired a laywer because how can anyone go from hiking 3 to 5 miles to not being able to sit up, stand for more then a few minutes, stay awake, ... and not be disabled?
I was tested a few years ago and was so MAD I burned all teh paper work and told my self NO WAY! Well it got me.
I went to a nurologist who isn't helping at all. He is getting a lot of insurance money and tells me I should be at teh PEAK of my money making life.
I have lived a VERY creditable life. DO drugs, drinking, no crime. I don't understand why this dr doesn't listen. He told my husband and I that he doesn't think it's affecting me. Have you experienced this?
I have a appt with the MDA clinic soon. It's scary to not have anyone that is going thru this. I am to tired to go anywhere. Please respond.
Thank you, SAGE
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rich2112c
Registered: 01/12/11
Posts: 1
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| | 01/12/11 at 11:31 PM | Reply with quote | #2 |
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Hello
To start let me tell you about what i have. I have Myotonia Congenita (beckers) it is a rare form of muscular dystrophy. You have it your whole life but doesn't become prominent till you are in your mid-to-late teens. So when i was 17 i was doing construction i fell and broke my neck and back because of my BMD. I had a traumatic brain injury which completly changed my life.
I grew up from the time i was born i was in all the sports ect... i played everything. Then i woke up out of the coma got told that i was going to be "for lack of a better term a gimp" for the rest of my life. At 1st i took it a yea whatever you say Doc but then it physically hit me. It has been 7 years since almost 8 and ive gone through a lot. I tryed church i tryed drugs i tryed dealing with it i tryed alcoholism none of it works. All you can do is smile realize theirs nothing you can do to change you physically but do all you can to help change things emotionally. I have spent my whole life helping other people and thats what does it for me. Thats all you can do.
Write me back
tell me how old are you where you from
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lyzarose
Junior Member
Registered: 08/08/06
Posts: 2
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| | 01/26/11 at 11:02 AM | Reply with quote | #3 |
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Hello Sage. Believe me you are not alone in this. I once was a very active person too. It can really be a struggle. I have Type 1. Please feel free to email or message me anytime at lyzarose@hotmail.com. |
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