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

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@abuela4

I have recently been diagnosed with IBM.

My major concern is the swallowing difficulty. Only 25% of those with IBM have this muscle group probkem.

Does anyone have advise on how to deal with the challenges of IBM?

ABC

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Replies to "I have recently been diagnosed with IBM. My major concern is the swallowing difficulty. Only 25%..."

Good morning and welcome to Mayo Connect. When I saw the title of your topic, I was a little confused, and needed to figure out what IBM could possibly be in this context, so I looked it up. Here is an existing discussion of IBM (Inclusion Body Myositis) that goes back to the early days of Connect. https://connect.mayoclinic.org/discussion/inclusion-body-myositis/?pg=4#comment-683848 To see the most recent posts, find the little box that says "Oldest to Newest", click and choose "Newest to Oldest"
I hope you can find a few people to connect with there.
Sue

Hi @abuela4, I wanted to to add my welcome along with Sue's. You will see I moved your post to the discussion that Sue suggested.
https://connect.mayoclinic.org/discussion/inclusion-body-myositis/?pg=5#comment-733940
I did this so you could meet others with inclusion body myositis (IBM)

You might like to read this article as well:
"Treatment Strategies for Dysphagia in IBM · by N Mohannak · 2019 · Cited by 17 — Minimally invasive methods should be considered first-line to improve swallowing in IBM patients with ..." --- Dysphagia in Patients with Sporadic Inclusion Body Myositis: Management Challenges: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6901064/

Can you share a little more about your diagnosis? Are you currently experiencing symptoms?

I also have swallowing problems. I have sessions with a Speech Therapist. I have exercises to do with my tongue and the muscles in my mouth. I also take medication to lessen the production of saliva as this interferes with my speech. I suggest that you consider working with a Speech Therapist.

Abuela4