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Finally I found a site for MD people to talk to, Hello!
Hello everyone!
I’m a 35m with a unknown MD diagnose, it could be SMA type 3 or Limb girdle, but need a DNA test and other tests to see what I actually have 100%, but there’s no known cure anyway so I haven’t went through that process yet since it cost money out of pocket as well to get these tests done.
Anyhoo, I have joined this forum so that I can talk with other fellow people who have MD or has someone in their family or friends. I stopped walking around 2001, and in a wheelchair now with less mobility.
Music is a huge part of my life, I used to be a drummer and singer in a band, but when I couldn’t really drum anymore, I converted from rock and roll to music producing and then moved to computers more and mostly music produce Electronic Music these days with a variety of genres. I also am a gamer, I broadcast my gaming and do commentary on a website called twitch.tv that streams my gaming and also webcam, where people can go to the site and chat in the chatroom and interact with me. I’ve been doing that for about 7 years now, and have done a handful of charity events doing gaming marathons to raise thousands of dollars for charities like Child’s Play and Toys for Tots, and trying to get setup one for MDA as well soon. I tried to get Able Gamers as the charity pick last year, but was not picked. They help disabled people with devices and such so they can get back to gaming using modifications that best suit that individual gamer since every person has their own needs.
I’m computer savvy since I was a kid, so am pretty knowledgeable with computers and have done pretty much anything you can think of from blogging,animation,photoshopping,tech support, etc.
Hobbywise, I like playing poker and video games as well. Well that sums it all up about me quickly, I’ll be around the forums and hope to interact and talk to one another in the future perhaps!
Re: Finally I found a site for MD people to talk to, Hello!Hello drum infected,
Many MD peeps seem to have a best-guess diagnosis. I was diagnosed in the early 1970’s with MD but no confirmation of type until around 2000 when a Neuro Consult who felt he had to do something with me sent me for a genetic test. Technology does give disabled people occupation and interests. I used to work for the Uk Government and after leaving moved into some web writing as a keen hobbyist.
Welcome to the forum
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Finally I found a site for MD people to talk to, Hello!Welcome druminfected
Glad you’ve found us!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Finally I found a site for MD people to talk to, Hello!@amgmod wrote:
Hello drum infected,
Many MD peeps seem to have a best-guess diagnosis. I was diagnosed in the early 1970’s with MD but no confirmation of type until around 2000 when a Neuro Consult who felt he had to do something with me sent me for a genetic test. Technology does give disabled people occupation and interests. I used to work for the Uk Government and after leaving moved into some web writing as a keen hobbyist.
Welcome to the forum
When i was first diagnosed in the mid 80’s they thought I had a carnitine deficiency as a kid and they made me take this yucky oral liquid medicine everyday for a few years and found out it wasn’t doing anything and was wrongly diagnosed.
Re: Finally I found a site for MD people to talk to, Hello!Ahh yes, the wrong diagnosis, many have been there. The more we discover the less we are sure of, it seems.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Finally I found a site for MD people to talk to, Hello!Hi! I’ve had loads of genetic DNA tests and as yet, no firm diagnosis! Join the club! Nice to meet you. Pippa
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