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This is the message boards forums for the International Myotonic Dystrophy Organization. This site is for members and others to read and post information about Myotonic Dystrophy. Please help us by posting information about the disease that you are aware of. You will need to do a simple registration process that will prevent spammers from posting on the site only if you want to post. No registration is required for reading. Whether you are viewing or posting we thank for all your help. The main organization website is http://www.myotonicdystrophy.org You may also want to view the guestbook as there is some good information there. http://www.theguestbook.com/read.php/613431

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btstaab
Junior Member
Registered: 04/26/09
Posts: 3

    04/26/09 at 10:42 PM
Reply with quote#1

Hi, was glad to find this message board as I was just diagnosed with Myotonic Dystrophy Type 2 by the Mayo Clinic in Florida.  I don't know much about it yet except it does cover a lot of my symptoms that I've been doctoring for.  Took a couple years to get the diagnosis though.  I have been off work for a year now and am just now going back to work but not sure if I can handle it.  Fatigue seems to be a major issue for me along with all the muscle issues themselves.  We don't know of anybody else in family who may have this yet but I think my father may have had it but he was the type who wouldn't see doctors at all.  He died of heart attack at age 57.  I know I have had the muscle locking or spasms since my teens but now have chronic pain in legs and notice lack of of muscle strength.  It's frightening to get a new diagnosis like this on top of my current conditions which include Type 2 diabetic for 20 years, hypothyroidism since age 10, low IGG numbers and was actually put on IVIG treatments every 2 weeks which the Mayo Clinic now says I did not need!  I had a port implanted and everything!  I am on the insulin pump which has helped but it's difficult to think of adding something else when just the diabetes can consume my days on bad days!  I'm sorry if I am just babbling on but husband isn't much of a talker and I just feel like I need to talk to somebody who is familiar with this disease.  Any replies would be much appreciated!  Terry in Florida


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Terry Staab
dmchat
Super Member
Registered: 05/01/07
Posts: 71

    06/30/09 at 04:17 AM
Reply with quote#2

Terry try joining mmaxx that deal with just DM2 http://health.groups.yahoo.com/group/MyotonicDystrophy2.


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Simon
godoggo3
Super Member
Registered: 08/31/07
Posts: 43

    08/04/09 at 06:58 AM
Reply with quote#3

Here is some background on DM2. Toba runs a support group based out of Toronto. Use previous contact listed above:

Here is some additional background on DM2

Richard



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This is a disease that will be conquered one day!!
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