Heartbroken and sad

Avatar for daggs170
iVillage Member
Registered: 03-25-2003
Heartbroken and sad
5
Fri, 07-11-2008 - 1:48pm

I tried to look up Inclusion Body Myopathy, and found a few sites, don't tell much except it is very devestating and I feel this girl will be in a wheelchair in another 6 months time.  I hope I'm wrong.  I hope they come up with at least a clinical trial.  This is very rare she was told, but the following site gives a little of what it's about. 


 


http://www.ninds.nih.gov/disorders/inclusion_body_myositis/inclusion_body_myositis.htm


 


http://www.wrongdiagnosis.com/i/inclusion_body_myopathy_3_autosomal_dominant/signs.htm


 


Also, a big question here.  What has happened to our Rosemary?  I haven't seen her on board for quite awhile.


A good day to all, hugs. 

Bea---My NY family
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iVillage Member
Registered: 09-19-2003
Mon, 07-14-2008 - 5:37pm
bea what an awful disease i had to read back to see who has it! you know i have been wondering about rosemary too..i know i havent posted in a while myself,but i do come and read,and i dont remember seeing her in quite a while..i hope she is ok...hugs min

    

                      

iVillage Member
Registered: 10-11-2004
Mon, 07-14-2008 - 7:18pm

Bea it is very sad, I knew about the disease and the weakness but I didn't know about the swallowing problems. I is so like Lou G, disease and she is in for a long hall and all you can do is encourage.

Betty L. Keep and Angel on your Shoulder & a prayer in your heart.

Avatar for daggs170
iVillage Member
Registered: 03-25-2003
Tue, 07-15-2008 - 9:23am

Yes Mindy, I've also been worried about Rosemary, but read on because I just answered a post today to her.

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Avatar for daggs170
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Registered: 03-25-2003
Tue, 07-15-2008 - 9:36am

Thank you Betty.

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iVillage Member
Registered: 03-01-2006
Wed, 07-16-2008 - 12:12pm

I am so sorry to hear about your friend..everyday it seems we hear some thing new, someone we know, some awful issue


I hope she will be able to get treatment that will slow/minimize the effects


I heard from the sister of my friend who died and got a link to the online memorail book: a beloved teacher


I posted today, finally..sort of used your 10 point style!


hugs

Dutch


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Dutch