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Triker7
@triker7

Posts: 1
Joined: Nov 08, 2011

Inclusion Body Myositis

Posted by @triker7, Nov 8, 2011

This is a form of muscular dystrophy that has no known cure…..I would enjoy someone to share the conversation about…there are several gene therapy trials going on at a slower than necessary rate…..thanks…Ted

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AW
@awhall75

Posts: 1
Joined: Jul 11, 2016
Posted by @awhall75, Jul 11, 2016

My husband has Inclusion Body Myositis. He was misdiagnosed in 2006 with Poly myositis. He only found out last year, with another biopsy, that he had IBM.


Kelsey Mohring
@kelseydm

Posts: 305
Joined: Feb 24, 2015
Posted by @kelseydm, Jul 11, 2016

Hi @awhall75. I’m tagging @splinte, @dk, @bonnieh, @jmbjar and @gailfaith who have posted about IBM or other forms of muscular dystrophy in the past and can hopefully hop into the conversation to provide some support and insights.


gailfaith
@gailfaith

Posts: 163
Joined: May 11, 2016
Posted by @gailfaith, Jul 11, 2016

Hi @awhall75, I am gailfaith. Or just Gail for short. Following an injection of cortisone into my knee before it was replaced, I had a bad reaction and it precipitated my onset of myotonic dystrophy Type 2 which is also a genetic disease and a form of Musclular Dystrophy. As none of the local doctors told me what it was, but they knew enuf to know that “I could get worse, but never better” so in Nov 2013, I flew out to Mayo where they put a name to it following a biopsy. I have been in physical therapy since. What ever happens don’t stop exercising because what you don’t use, you lose. In Jan of this year because there was a problem with Medicare, I couldn’t have PT, I made the mistake of doing a lot of walking to make up for the PT but used a walker. That was a bad move on my part as walking became slightly more difficult, but since my therapist didn’t think the walker use was to blame, I just had to return to Mayo for another issue, so I used my walker. The first time I had my service dog with me and I soon got tired so I had someone push me in a wheelchair after the first few days. This time I had expected to use the wheelchair. but instead I never did and used my walker. Now I am convinced that even thoughI was walking, I became dependent on the walker and now my walking is even more difficult. But my therapist thinks that we can get back to where I was. When he said that I said, “come hell or high water? ” and he said “you got that right!”. I’ll work hard to get it back, but not sure that is possible. When I returned to Mayo where I had one of my 4 parathyroids removed due to a high level of Ca in my blood, my orthopedic surgeon thinks that having that risky surgery might allow me to get some of my strength back from the MD2. I’ll keep you posted. I am not a spring chicken but a senior, senior !!!!!! citizen.


Teresa, Volunteer Mentor
@hopeful33250

Posts: 2247
Joined: Mar 28, 2016
Posted by @hopeful33250, Jul 11, 2016

@awhall75 Welcome to Connect! I see that you just joined. I’m sorry to hear of your husbands problem. Have his doctors suggested a treatment? Since I’m not very familiar with this disorder would you mind sharing some of his symptoms? I know that you will find encouragement and support at Mayo Connect, please keep in touch with us! Best wishes, Teresa


mklam
@mklam

Posts: 2
Joined: May 10, 2017
Posted by @mklam, Fri, May 12 2:51pm

My Husband has just been diagnosed with this condition. He has had genetic testing only a couple of days ago. I didn’t know there were type of trials and this may not apply to us, we live in Canada.
We are looking into adaptations we may have to make in our home to ensure his safety. More importantly I would like to find some treatment to slow down the muscle loss
Merle

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