Inclusion Body Myositis: I'd like to talk with others

Posted by Triker7 @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

Interested in more discussions like this? Go to the Autoimmune Diseases group.

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.

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@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

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@awhall75

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.

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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.

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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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@dexter651

Food to eat if you have ibm

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Hi @dexter651, welcome to Connect. If you feel comfortable, would you mind sharing a bit more about your situation so members have a bit more to share with you as well?

How long have you known about having inclusion body myositis? What sort of treatments does it require? What sorts of foods do you currently eat and are you looking for foods that help manage your condition better?

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@JustinMcClanahan

Hi @dexter651, welcome to Connect. If you feel comfortable, would you mind sharing a bit more about your situation so members have a bit more to share with you as well?

How long have you known about having inclusion body myositis? What sort of treatments does it require? What sorts of foods do you currently eat and are you looking for foods that help manage your condition better?

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Well I was just recently diagnosed with my condition in March tried prednisone it did not work for me going to try a new medication starting Friday .but I want to know what kind of diet is best for me

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@dexter651

Food to eat if you have ibm

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Hi @dexter651,

Here is some information from Mayo Clinic about IBM, muscular dystrophy, including diet, coping and support: http://mayocl.in/2taBIXg

I'm tagging @rama, @tonyc55 @jamesthee @awhall75 @splinte @dk @bonnieh @jmbjar @mklam @gailfaith who have posted about IBM or other forms of muscular dystrophy in the past, and will hopefully join this conversation to provide some support and insights.

@dexter65, have you started the new medication? How is that working for you?

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@kanaazpereira

Hi @dexter651,

Here is some information from Mayo Clinic about IBM, muscular dystrophy, including diet, coping and support: http://mayocl.in/2taBIXg

I'm tagging @rama, @tonyc55 @jamesthee @awhall75 @splinte @dk @bonnieh @jmbjar @mklam @gailfaith who have posted about IBM or other forms of muscular dystrophy in the past, and will hopefully join this conversation to provide some support and insights.

@dexter65, have you started the new medication? How is that working for you?

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My husband who has been recently diagnosed with IBM has started a program with physiotherapist, occupational therapist and gym trainer. In just two weeks he is steadier on his feet, walking better and feels more balanced. Miracle? No I don't think so but any little improvement that may delay further muscle weakness is worth celebrating. A small improvement makes a big difference in mood and hope to keep walking longer. There seems to be wisdom in using your muscles. Merle in Montreal

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@dexter651

Food to eat if you have ibm

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Why don’t you tell us what foods to eat? I want some good news. I don’t need to hear more stories of what does not work.

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@brentdan67

Why don’t you tell us what foods to eat? I want some good news. I don’t need to hear more stories of what does not work.

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@brentdan67 – I wished I had a black and white answer for you on what to eat and what not to eat for IBM but I’m not sure there is one. Here is a PDF document on “Nutrition and Myositis: What we know (and still need to learn)” by Renee Lantner, an MD with DM at
The Myositis Association Annual Conference, September 2016, New Orleans, LA:
http://www.myositis.org/storage/documents/2016_APC_Presentations/new/TMA_2016_Nutrition_sans_photos.pdf
Hopefully this will help…

John

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Hi, what kind of treatment is given and what do they use to determine the best course of treatment. What lab tests were performed to confirm IBM. I’ve had blood tests, MRI and a muscle biopsy. Thanks so much!

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