Dealing with inclusion body myositis: Want to connect with others

Hello,
Doctor suspected i had IBM, also had everytest done, finally doctor ordered muscle biopsy,
and a blood test and it was confirmed.

I’m looking to connect with others who are dealing with this incurable disease. I’ve been combating this horrific disease for 10 yrs. I’d love to hear about your plight.

After a year of wrong diagnoses and non-diagnosis, finally got the sad news- inclusive body myositis. (Mayo figured it out immediately . Why not others?)

I’m so sorry it took so long to get a diagnosis and then such difficult news! Since this is probably autoimmune you might find others with similar issues on that group.

I hope you will find good physical therapists and occupational therapists to assist you through any difficulties you might have. Just like doctors, there are really good ones and not so caring ones. I’m not sure what the protocol is for PT, but I wouldn’t hesitate to start early as the therapist may be able to help preserve as much muscle function as possible and/or recruit other muscles to assist those that have weakened.

Thank you. I should have made clearer that it's a friend.

After a year of wrong diagnoses and non-diagnosis, finally got the sad news- inclusive body myositis. (Mayo figured it out immediately . Why not others?)

That’s so great! My granddaughter has a different type of Myositis, and I’m hoping she will be dancing, too! She had been in remission but a recent flare has caused thigh muscle problems.
How’s your friend with balance issues on memantine? On the dementia care group you said she had been in despair, but dancing now? Sounds like they found the right answer!

I have had IBM since at least 2011-12 and was diagnosed finally in 2018 by deep muscle biopsy, EMG, and blood test. I was granted full disability in 24 going back to 2019 under IBM. I also was confirmed in late 24 by separate medical research clinic. I still walk good with balance assist so I have a lightweight roller. It's been a slow roll of muscle waste in legs and forearms each year, do not have any swallowing or pain issues(unless I fall and I do at times and they are severe) but that's likely due to I am still quite mobile. I know a lot about the disease as the doctors seem to be taking a lot of notes from me as they lack patient input. If I knew in 2012 what I know now I could have likely bought myself 5 years of extra mobility in walking without assistance. This is critical as mobility extends life span in most cases. However there is a lot of hope coming in next 1-5 years to get people out of their wheelchairs. I'm a high tech engineer with enough medical knowledge to interact with medical at very high levels. This disease can be moderated with a good plan until help arrives of which it is coming.

Some things I do right now that work for me.
-I do not take any drugs of any kind right now for treatment
-Trying to keep moving without pushing yourself to leg or arm exhaustion is difficult and one must plan each movement so you don't end up on the floor. Continued muscle activation is key to everything so you have to find a technique to move muscles no matter how little to survive for the short term. I do lightweight band resistance, very small weights, rowing on a fixed rower, fixed biking, and a lot of high end vibration 30 mhz which helps loosen muscles and improves balance. I should be doing this everyday but I struggle to get 2-3 days in but it has helped keep me functioning and upright.
-restricting diet or doing intermittent fasting has helped lower inflammation which is I can tell causing me to be much weaker when I eat a lot of inflammatory foods. I do that at certain times of month and the longest I have gone is 19-20 hours. They say going 48-72 hours really helps inflammation so I'm looking into that.
-I've looked at other potential treatments such as stem cells, gene therapy, and I know they are working on several promising drugs that might be 2-5 years away, but I'm focused on the one that I know will allow me to walk and regain movement for another 20 years which is wearable robotic lightweight aids. The technology is now here and just needs to be refined for lightweight battery life and integration to durable medical equipment. The high end robotic engineers and AI engineers are saying within next 1 year I could be testing some top equipment as there working with paralyzed people also.

My advice is to try to keep moving as many muscles as you can often as I know help is coming from multiple directions (medical, robotics, AI, and bio-engineering) in the upcoming 1-2 years.