First meeting with IBM Dr

Had my first meeting with my IBM doctor today (diagnosed in July with a muscle biopsy). Said he had been practicing for 30 + years and had seen maybe 5 IBM patients (also said all of them had "declined" over the years) Coincidence was that his one other current IBM patient lived in the same small (20000 pop) town where I live.

I knew my legs were weak but I thought my hands were ok--we did the hand squeeze device thing, his were both about 40, my right was 14 and my left hand was 9! Have to work on that. He is not prescribing any medicine until he gets some more blood samples.

I walk, climb stairs, get out of chairs, etc. but get fatigued easily. He said I could exercise as much as I wanted. I am 76 (glad it hit so late!)

Hi Bob!

If I might offer a little unsolicited advice... Just because your doctors other IBM patients declined, doesn't mean that you will! Keep up the positive attitude and continue working to get as strong and healthy as you can because it will only help you in the long run.

Thank you for sharing your update with us!


Hey Bob , I agree with Maren, she’s totally right, keep up the great attitude, pace yourself on strength building, and your going to be that one patient your dr is going to be talking about, and how great they’ve done with a challenging disease. There’s alway hope as long as we breath.

Hi Bob,

That is a weird coincidence that all of the patients are in the same area….this is such a rare disease, it's not easy to find someone in the same area with it.

I think the girls are completely right, you sound like you have to right attitude to fight this and stay as healthy as possible!

Keep us in the loop, we are all here to listen and chat when you want to.

They say it's never to late to do strength building. There's a lady in Baltimore MD who started in her 50s. She is now 82 and she looks like a 30 year old body builder. She's amazing.

My thigh muscles are pretty weak. I just started to do squats to help strengthen them. Now my knees are killing me. I have osteoarthritis in my knees. Cant win for losing. oh well. I'll keep trying when I can.

You’d probably do better with the ankle weights than squats. Then just walk with them on. I was told yrs ago squats were extremely hard on arthritic joints in knees ankles and hips… You could very easily blow out your knees with squats, particularly with weaken muscles and not much to hold things together. Be careful please