IBM diagnosis today

[InspireMe]

Hi All. I have just been diagnosed with inclusion body Myositis and I am just overwhelmed by this and not knowing what to do next. I will be seeing the neurologist again at the end of this month for next steps but just wondered how to cope in the interim period. Having gone through blood tests, CT scans of hip and spine, EMG and muscle biopsy and still being in pain it is taking it’s toll. Any advice please?

[Jo-Goode Administrator]

Hello!

Sorry to hear about your diagnosis of IBM.

I was diagnosed with Dermatomyositis 25 years ago (aged 25 with total muscle loss) and one thing we both have in common is exercise is a form of treatment.

I will post some links that may be helpful

myositis.org.uk/myositis-in...

myositis.org.uk/myositis-in...

Link has links for IBM home exercise sheets and video's (Myositis UK has had both Dr. Helene Alexanderson and Sue Maillard speak at UK patient conferences) myositis.org/about-myositis...

Link for the Myositis UK Forum on facebook, which is more active then this web based group: facebook.com/groups/Myositi...

Also follow Cure IBM, although USA based it will post about the latest in IBM research and news cureibm.org/

Facebook page: facebook.com/Cureibm/

Kind regards,

Jo Goode

[InspireMe in reply to Jo-Goode]

Thanks so much for your reply Jo. I will read through the information links you sent.

[InspireMe]

Is anyone currently receiving treatment for IBM and if so what? Having being recently diagnosed I just wanted to see how others manage IBM. Thanks.

[InspireMe]

Hi Jo. Is it possible to filter on this site to be able to see IBM separately at all? Thanks

[Jo-Goode Administrator in reply to InspireMe]

Yes it is possible to see separate IBM posts, see right hand side in topics. The only issue with this is that the person who puts the post up has to add the topic and people often forget.

[w234]

Hi guys i have been recently diagnosed with myositis, I am 18 years old and i just wanted to find out what i can do to help myself