IBM - Mimics ALS

[LMCOMISKY]

My husband was diagnosed with ALS in the Fall of 2012. After 6 months of testing and treatment it was determined he did not have ALS but instead had IBM - Inclusion Body Myositis which mimics ALS without the tragic ending of death (although some IBM cases do sadly end in death as well). We have come to find that there is little awareness or interest of IBM within the public forum and we are having a difficult time finding any resources for dealing with this disease. I am watching my husband literally waste away before my eyes and I don't know what to do. Even his doctor only wants to see him once a year and has basically told him to live his life as best he can until he can no longer. I would greatly appreciate any information, advice, tips, etc... if anyone else out there is dealing with this hideous disease. Thank you so very much in advance!

Sincerely,

Lindsey Comisky

 

[gooseberry]

I am sorry I really don't know anything about this family of diseases. I first heard about them when it was a differential to als for my husband. I thought the neuro had said it was treatable with medication and steroids but I may be mixing things up.

 

[skipper66]

I am losing it for sure or I need to get my eyes checked. I first thought I read it as IBS and was thinking Irritable Bowel Syndrome and was thinking WTH? How does that mimic ALS. Boy, do I feel dumb at the moment. lol

 

[gooseberry]

Overview | Inclusion-Body Myositis | MDA

This should give you more information

 

[gooseberry]

I posted a link to mda . It has an educational section about this disease and they treat it and provide support for those that have it. You might want to check out your local chapter. The link should come out of mod tomorrow.

 

[LMCOMISKY]

Dear Gooseberry,

Thank you so very much for your information! You have been extremely helpful and it is greatly appreciated!

Warmest regards,

Lindsey

 

[LMCOMISKY]

Dear Skipper66,

I am happy I was able to give you a good laugh! We all need more of them for sure!



Lindsey