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

@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

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!

I have recently been diagnosed with sIBM and would love to talk about any effective activities/choices to mitigate the problems living with this untreatable Autoimmune disease. Certainly there is the push for non-stop workouts to build muscle. Are there diets, supplements, vitamins, specific "dos and don'ts", weather, etc. that make any difference? It would be great to share experiences.

My wife is doctoring through the Neuropothy Dept. at KU Med. They sent us to Mayo and got diagnosis for Cerebral Ataxia and quantified the loss but no mention of IBM (Inclusion Body Myositis). I believe her weakness, falling down and dropping things may be caused by this. Do we need to see a different department?

Hi, this is Flor. It's so interesting to read your statements regarding Myositis in general, and I learned there are types of this condition. Never eard of IBM I think I had myositis when I was a child, 8 years old. I don't remember my mom talking about a definitive diagnosis, but poliomyelitis or else at that time. Because of the clinical symptomatoloy I had I thought it was Guillian Barret, years later, because the weakness started in my legs up my body getting to my arms. I couldn't walk neither move. I had no pain at all. However, prior to feel the muscles weakness, I had a couple of days of pain in my extremities and my walking and movement were heavy. My treatment was IV fluids with vitamins for a week or more, bedrest, cast on my legs/feet and physical therapy for almost three months, the entire time. I was discharged home walking 100%. I recovered in 2 months and a half completely. Why am I interested in knowing more about Myositis? In March 2015, all of a sudden, I experienced a rapid feeling in two muscles of my anterior aspect of my thighs like falling down, that lasted less than a second. No pain or other complaint. it was only the feeling like they lost strenght. As the days passed, I was noticing some weakness in my two thighs, anterior aspects, and some difficult to move that was increasing little by little. I went to a specialist, neurology, and blood tests, physical exam, ROM, X-ray and found nothing. So I suggested physical therapy. I did it for 3 months religiously plus the routine at home and I recovered completely. So I include physical activity, walking, bycicling, dancing, and watching myself. I was very scared this second time. Faithfully thinking positive being grateful of my recoveries. Praying for all of you. Going to a speciliazed doctor is the key!

Hello @fiore and welcome to Mayo Connect.

Your example of advocating for yourself is wonderful. Seeing the right specialists and working with physical therapists and continuing to exercise are all important ways that we can feel better.

How did you go about finding the right specialist?

I was diagnosed with polymyositis in January of 1976. The worst year of my life. I had just gotten married 8 months before, at 19, and our marriage did not survive what the doctor described my future to be. I was treated with tons of prednisone, and had many side affects I don't know which was worse, the disease or the treatment. All I know was I was very weak, in pain, very thin, fatigued, and very depressed. Then got a bleeding ulcer from the drugs, and things went from that to colitis to myositis to crohns disease. After many surgeries, I now am on tpn, and now have degenerative scoloiosis ,myositis,etc. and it looks like I will have that wheelchair after all. I'm 63.. To me, loss of dreams was the symptom that hurt the most. Loss of doing things for myself . I wish you well.

I empathize with your unfortunate disease experiences. I relate to the pain of your losses. My husband has inclusion body Myositis. He has lost so much muscle that as a former relented athlete he can barely walk. I have cried my heart out so many times over the losses he has experienced with difficulty swallowing, attempting to walk down a step or open a bottle of water. All these things he has valiantly gone o. On his attitude to be resourceful and find something to bring him joy. I believe this is the key thing in this type of situation. Find something I. Life that can bring you some happiness. Keep on enjoying life. This is all we have left . I only hope you can find something in your sphere to give you some happiness

I have 4 wonderful children and a very handsome grandson who is 7 months old. I take care of my 90 year old mother who is in an assisted living nearby. I'm active in my little country church, and enjoy an eccumenical bible study weekly, and also a book club monthly. I enjoy 2 "coffee" groups weekly. This is when I am not expieriencing a flare.So I have made a life, and a pretty good one at that. I have fought to not be defined by my diseases, sometimes we all just wonder.....I have been divorced for quite a few years, and am so proud of my children, they are my happiness. Oh I am blessed, but sometimes....?

I am 68 years old and was just very recently actually diagnosed with IBM thru a muscle biopsy. However, I have been dealing with the disease for about 16 years. I attributed my issues to old age or arthritis. My Dr. says the disease has progressed very slowly in me. It all started out years ago as mild issues when climbing stairs and slight balance issues. I am one of the lucky ones who also has dysphagia and it is my real issue. It has gotten pretty severe and I have lots of prbs getting some foods down. I am learning what to eat and how to deal so that I don't end up with aspiration pneumonia (twice already) I am ready to learn as much as I can about how others deal with this disease.