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

<p>I have iinclusion body Myositis after my last Covid vaccine. Iam 80 and have always gotten the yearly flu shot, but read that the Flu Vaccine can also be a trigger for Myositis, is that correct?</p>

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.

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

Hello Gail!How did they test you to get your diagnosis?Was it just a muscle biopsy?I had an iron infusion/possibly covid which set of a reaction a few days later.I lost all of the strength in my trunk of the body that I lost the ability to walk.After being bed bound for months.I am able to walk again,but it is not normal since I still don't have the midstrength.The doctors only found a couple things with the spine and neck,but nothing needing surgery.No doctor knows what it is.