I am dealing with advanced inclusion body myositis can we chat

Do you know if you have the MTHFR gene anomaly? Hubby was diagnosed with IBM but has two copies of the MTHFR gene which does not allow him to properly use B12. We put him on methylfolate at a baby dose and it brought his homocysteine down to normal in three weeks...and stopped a lot of his muscle pain.

We also put him on an anti inflammatory diet once we received the IBM diagnosis...it really helped.

Your husband has the genetic version of IBM, I do not, my IBM has no explanation, I had a muscle biopsy years ago which showed that I had IBM, the biopsy was correct, and I am now dealing with significant muscle wasting in my legs, hands, arms, shoulders and many other areas, I’m in a wheelchair, and am plugging along. I wish the best for your husband, it sounds like you are aggressively treating his IBM and I wish you all the success in his treatment.

We have been really lucky with an early diagnosis, lots of interventions to slow progression and some great doctors. He is still able to walk without any assistance 10 years in but has significant muscle loss.

What kind of challenges are you facing with IBM?

I deal with significant challenges, I’m in a wheelchair and can barely use a walker in my home. My arms are very weak, and I’m dealing with muscle wasting and it’s difficult to pick up things. I struggle with dysphagia and have a feeding tube to get my liquid nourishment. Swallowing is very difficult, and the food gets stuck in my throat. Overall things are very challenging. Hope this answers your question, feel free to ask anything that you’d like to know.

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.