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update on daughter

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Posted 10/28/2011 4:52 PM (GMT 0)
Just wanted to share some good yet confusing news. Today I received my daughters genetic test results saying she does not have type 1 Myotonic Dystrophy. Now I am confused. There are 2 types, and they tested for type 1. I am not sure which type I have, they never said. When I read the differences on myotonic.org the type 2 has more of the muscle aches and pains. Guess I am going to have to ask for genetic testing. so yes...happy... but very frustrated.

- Tracey
Posted 10/28/2011 5:08 PM (GMT 0)
Tracey

I am celebrating your good news with you even thow I know it is a bit confusing.  Please do talk with your daughter's medical team to learn more about the meaning of this test result.

We are all here thinking of you and please know we care.

In dealing with a disease such as muscular dystrophy, support groups can be a valuable part of a wider network of social support that includes health care professionals, family, friends and a place of religious worship. Use us well as that is what we are here for :-)

I wish you peace,

Kitt

Posted 10/28/2011 5:37 PM (GMT 0)
This is indeed good news!!! Try to take some time to just enjoy the great results for now:)

I remember when you first posted and I did some reading on MD and the type 2 did seem to have less complications and health related issues...is that the type that you have? If so, if I remember correctly, then there is less of a chance that your children would be affected.

I am so happy for you and the relief that you must be feeling regarding your daughter! Give her lots of hugs and relax in the great news:)

I hope that you are feeling well too. Thanks for the update, and keep posting!

S.C.
Posted 10/28/2011 5:47 PM (GMT 0)
Thanks. I want to feel happy...but I feel sad and am crying. I dont know why( maybe PMS lol) anyway..Im not sure of what type I have as they have never told me. I emailed my neurologist asking this stuff.I am going to insist on getting genetic testing I think.
Dont get me wrong, Ia mVERY happy if she doesnt have MD. I am just hurt because then we are back at square one as to what it is and weve been doing this for over a year and I thought we were finally going to get somewhere.
but yeah..I will get over it:)
Posted 10/28/2011 11:01 PM (GMT 0)
Tracey

 

I understand what it feels like to have mixed emotions re test results.  You feel relieved and grateful yet you are confused and emotionally upset as you still do not have the answer to what is causing the problems.

Let yourself feel and know you are normal.  Coming here and posting is a good thing.

Gentle Hugs,

Kitt

Posted 10/28/2011 11:52 PM (GMT 0)
Guess I will have lots to talk about in therapy on Monday.
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