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

The rare disease medical community mores very slowly. There are various trials going on around the country, I’m at University of Kansas Neuromuscular Research in a phase 1 stem cell trial. One of these people have a rare disease, can you tell which one?

I was diagnosed with IBM a year ago after more/less five years plus of symptoms. IBM was confirmed with a muscle biopsy.
I live in Barcelona, Spain and I am being treated by one of the national health research hospitals. I am considering going to Johns Hopkins to find out information on esophageal surgery as I have swallowing and eating issues. My legs are strong, however, strength in my arms and legs is another issue.
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Following

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

@abuela4 Do you mind if I ask a couple of questions? You receive care currently by one of the national health research hospitals and are working with a speech therapist. Have any doctors or therapists mentioned any problem with your esophagus that’s making you consider esophageal surgery? What are you hoping to achieve with surgery? I’m not trying to dissuade you from going to Johns Hopkins.
Are you unable to get the care you need where you are? Maybe you can tell me a little more

My husband has IBM in advance stage, he has horrible issues with his esophagus. He chokes on every. They have done 1 procedure to stretch his esophagus but it did not work.

I would like to know if there is a support group in Omaha, NE or Council Bluffs IA for IBM disease. I would like to talk to other people who have been diagnosed to tell me what works for them.

Hello @milkmaid23, Welcome to Connect. The Myositis Association has a page for Nebraska but it doesn't list specific locations. You can find more information here - https://www.myositis.org/patient-support/support-groups/find-support-group/nebraska/.

I clicked on the Newsletter link and it did show a meeting in Omaha with an address, although it's from 2019 and I'm not sure they are still meeting. The link above for Nebraska has an email address that you can contact for more information. Here's the July 2019 newsletter link - https://www.myositis.org/wp-content/uploads/2018/04/Nebraska-NL-8-6-19.pdf.

You may want to try Mayo Clinic as well. I am affected by IBM and I am on a regime to add some muscle mass to my arms and legs and lots stretching

Hi @nmenonk2022 - I thought I would tag you from this existing discussion on Inclusive Body Myositis so that you can connect with @billmixon99, @jmuller104, @abuela4, @angelgale, @angelgale and others discussing Inclusive Body Myositis. The link below will take you to the beginning of the discussion but since it was started in 2011, you may just want to read through the last few pages of active member posts.

--- Inclusion Body Myositis: I'd like to talk with others: https://connect.mayoclinic.org/discussion/inclusion-body-myositis/.