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

I was diagnosed about 18 months ago but was having issues before that. Original diagnosis was ALS. I stay as active as possible without getting fatigued, do not over do it. I'm trying to maintain skeletal muscle with keeping up my protein while trying to limit my fats to 30%.
I started a 501c3 nonprofit to try and help in a small way to bring awareness to IBM and perhaps help fund the next study.

Sad fact is that there is not a cure and no effective treatments. Take care of yourself and do all you can to NOT FALL. Get a cane, walker, modify the house, do whatever you need to avoid a fall.

If you'd like to help with some cutting edge research the following is one option: http://www.gettingup.org

My contact information is on that site if you'd like to reach out.

https://www.myositis.org good site, After looking at it I wonder if I have it too!

A funny thing happened on the way to a diagnosis… misdiagnosed with ALS. Then I went to the University of Kansas neuromuscular center - fantastic people!

They said; “you don’t have ALS”. Now they work to help me manage my sIBM. I’m so grateful that I started a foundation: American Neuromuscular Disease Foundation with a separate nonprofit 501c3 http://www.GettingUp.org

CONGRATULATIONS.
What an amazing moment of freedom to learn you did not have a serious disease you were told you had.
It's fantastic for you to start your non profit to help others. No doubt your new life will be fruitful for you and many others
I want to hear about your ongoing journey.
High five!!!!!

Thank you. But I don't participate in social media.

Hi. I’ve had problems with my muscles for a few years My muscles were just fading away with no strength. Standing after sitting my thighs would burn. Back pain also. My thighs will barely support my body weight. I’m 63 and this started about age 56 …. Tiredness comes with this. Please note I have not officially be diagnosed but in the process of getting a diagnosis. I have in the last 3 months started running fever low grade at nite. 6pm to 9 pm Like clock work. Been to many drs but to no diagnosis. Recently found ibm disease and read for hrs on it. Every symptom I have it’s fairly and trying to find out more about it. I’m fairly active ride motorcycles and love working on shipment. Recently I was diagnosed with arthritis. But leg weakness is real. I could press 500 lbs in high school But now I can hardly go up steps My blood work show very high creatinine levels and have been high for years Wanted to share. This with others to see what else I could find out Thanks. Bill

Welcome @billmixon99, Hoping you find some answers soon for your diagnosis. It's frustrating having gone to so many doctor and not having any answers. You mentioned having very high creatinine levels for years. Here's some information that might be helpful in your search for answers.

--- What to know about high creatinine levels: https://www.medicalnewstoday.com/articles/when-to-worry-about-creatinine-levels.

Have any of your doctors discussed any concerns for the high creatinine levels with you?

Years ago in my 20sabd 30s I gave blood to Red Cross got a 5 gallon pin only to be sent a letter stating my creatine levels were high need to get checked and I did. Negative on all items but couldn’t give blood anymore. Creatine we’re always high in those years. Planning n having a thigh biopsy to see if I has e IBM Excessive fatigue and muscle tenderness loss of strength I was told it was simulated to leukemia and muscular distrophy. .. ? Looking for someone who know about IBM

You might want to check out the post by @jmuller104 here - https://connect.mayoclinic.org/comment/754502/

I’m being tested tomorrrow for ibm Struggles everyday with led weakness and overall exhaustion. ? Arthritis is real but running fever spartiticly. Not sure what’s going on. Just wanted to comment