Discussions By Condition: Medical Stories

Steinert's disease?? (myotonic dystrophy? seems too severe

Posted In: Medical Stories 9 Replies
  • Posted By: julie obeid
  • February 29, 2008
  • 05:54 PM

i am a 28 year old mother of one. I have a problem because i dont know what the heck i have..... When I was younger, i could not run at the sound of the gun in gym class.... i would fall on my face... when i was sleeping.. i could not get out of bed and just walk right away.. i would have to wait a little before i could walk properly.... I would feel that my muscles were tense... but when i started to walk, i was fine and i could walk normally.... when i had to get up in front of the class to recite a speech, my legs would tense up and i would fall if i walked right away.... There was this one time.. i was in class and i had to go up a step to get behind a podium.... i was nervous and when i tried to step up, i fell cuz i didnt give my muscles time to adjust or something.... i really dont know what this thing i have is.... my father had whatever i have and 3 out of my 4 siblings do too... it doesnt seem that serious and it probably isnt but what i have read on the internet about steinert's disease scared me.... anyways... now i have a daughter and she has the same thing...... i didnt even give whatever i have thought before i had my daughter, who is 3 years old now...... i thought it was normal when i had it... now that i see my daughter i know that there is something wrong....... when she climbs up stairs, she has to give herself time before she goes up each step, and when she is sitting for a long time, she has to give herself time before she walks or she will fall..... and she has it in her hands too..... she cant open and close them quickly.... and she has it in her eyes.... when she sneezes, she cant open her eyes quickly... it looks like she has it more than i do.... but i dont know.... anyways.... i spoke to a doctor about her and he just gave me exercises for her to do every day.... i am going to see a genetics doctor to see what the heck this thing is... anyways.... just wanted to know if anyone out there has the same thing.... or what treatments or exercises or anything just want to talk to people that have the same thing...

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9 Replies:

  • thanks for the reply.... but does this thing passed on into other generations???? my father and 2 of my siblings have it..... some of my uncles on my dad's side have it..... not sure if any of my cousins have it though.......
    julie obeid 12 Replies Flag this Response
  • is anyone out there???? anyone have any answers? could this be a less severe form of steinert's disease?????
    julie obeid 12 Replies Flag this Response
  • i would like to get in touch with other parents who have a child with steinert's disease or any kind of muscular dystrophy... i want to see if there is anyone out there with what my daughter and i have....... any replies appreciated.... thanks
    julie obeid 12 Replies Flag this Response
  • anyone out there? any parents have children with myotonic dystrophy???
    julie obeid 12 Replies Flag this Response
  • anyone out there like and my daughter?
    julie obeid 12 Replies Flag this Response
    julie obeid 12 Replies Flag this Response
  • hi- i have the same problem- it is myotonic dystrophy and unfortunately there is no cure
    Anonymous 42789 Replies
    • January 21, 2009
    • 11:43 PM
    • 0
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  • No, I don't know but I would guess some kind of dystropy. It is very varied disease but yours definitely sounds genetic. I would do the genetic expert thing first. The doctors need to listen harder to this one. You should persist until they do.
    Kymmaree 8 Replies
    • February 16, 2009
    • 08:19 AM
    • 0
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  • ANYONE HAVE sTEINERT'S DISEASE OR mYOTONIC DYSTROPHY?Hi, my daughter in law and my newborn grandson both have myotonic myscular dsytrophy, the mother passed it down to the son who has a more severe form MD1 congenitial. The disease affects the muscles, you can find many sites with information on the subjects. There are 9 different forms, yours can be more mild and your daughters may be a little more progressed. I would recommend getting testing and to find out to what degree you both have it. http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=myotonic-dhttp://www.myotonic.org/http://www.myotoniacongenita.org/ on this site the lady had the same problem with falling down. I hoped I helped you out you can email me @ meyerap39@gmail.com
    Anonymous 42789 Replies Flag this Response
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