What Is Inclusion Body Myositis? 

Thank you for taking these cases. My husband recently passed from IBM at age 69. He was not military, but was a gunsmith and handled lots of toxic solvents and such.

Best way to diagnose IBM is from a muscle biopsy. Bloodwork and an MRI can also support the initial diagnosis. Unfortunately, I have it. (Canadian)

Diagnosed with IBM in November 2017 with a muscle biopsy. Basic training at Fort Ord, then to Fort Ord. Six months active duty, then 5 1/2 years national guard with summer duty at Fort Lewis and Yakima Firing Center.

In 2021, I was diagnosed having Parkinson, I have PTSD, Hypertension, had a stroke, and this past March 3rd, my Neurologist said I have ALS. Vietnam veteran, 78 yrs. old. Nice gifts from AO.

My husband died of IBM. It was slowly coming on, for several years we did not know what it was. Weakness, gave up golf due to weak hand muscles. Progressed in 2017 to leg weakness, went from walking independently to needing walker, then scooter, then pretty much immobile. Next, the arms, then it attacked his diaphragm and he could not breathe. Others with IBM lose ability to swallow and live with a feeding tube. My husband would have refused that if it had come to that. He died in 2019, just as he was going to need nursing home care. He had been a medical evacuation helicopter pilot in VietNam so some thought it could be Agent Orange related, but other doctors thought it was related to many years of taking statins for high cholesterol. It is just a horrible disease and not much is known about it.

My name is Leslie and I was diagnosed by a neurologist with ibm through a muscle biopsy,7yrs ago.but symptoms started 20 yrs ago in my early 50s.

My father had IBM and he was in the Marines. He ALWAYS thought there was a correlation but could never prove it. Unfortunately he passed away two years ago.

Hi, my father is 89, he has had IBM since he turned 65, 1935 baby, same as Elvis. He has never served in the military, only back when he was 18, in 1953 in the conscription army service here in South Australia. My thoughts are it's a vitamin deficiency, that leads to nerve damage etc., etc., vitamin B12, which only this year his doctor was injecting him with for 3x. Dad didn't realize he had to keep it going forever, he said he felt better, but he's no longer interested. He has given up driving, his legs can give out at any stage, so he does not feel safe driving, he doesn't do much, he's on a walker at all times and he can't stand for long periods. His hands/wrists don't have much strength, he can't open or close things. Other than that he's still my normal Dad...

I have been diagnosed with IBM and have never been in service

I was just diagnosed with IBM through genetic blood test by a Neuro Specialist. I was never in the military. I am 53 and symptoms started after my husband died in 2018 but really were noticeable after a car accident in 2021. I already have breathing issues from a partially paralyzed diaphragm from being overweight for years. Although during my husbands bvFTD I lost a lot of my weight from caring for him. I am having balance and walking problems now and am reluctant to start using my rollator walker. I live in central Indiana and would like to find a support group here that can help me through some things and with questions about the disease.

I've been diagnosed with IBM. Not a veteran.

I will definitely keep this in mind, because I never was diagnosed with ALS, but that was some thing they were looking at some years back with me. Thank God that wasn’t the case but I do experience some of these symptoms, weaknesses, and that sort of thing, but it could also be a audio immune disease thyroid, or just other conditions hopefully that’s not my case but I will pay attention. Thanks for the video. Very interesting.

Veteran 76-83 Army aviation, toxic exposure and have 3:17 IBM

I have all the Symptoms listed from the VA web site.

My husband has this. Filed a claim and was denied

My husband has IBM, he was diagnosed 5 years ago, the doctor believes he has had this for maybe as long 10 years.

i have been diagnosed with IBM but i have never been the service

How many we can survive with IBM without going petmenent for bed supporting by others. That is horrible to. Live

Hello Has there been a treatment developed to treat IBM Regards

Is there any solution for IBM. Pl sugest

I’d like to know about Stiff Persons

WAS AWARDED DISABILITY 10% HYPERTENSION. NOW Have diabetes, and Stage 3, Critical Kidney Disease can I file all on one claim form. Is the hypertension my nexus? 😊