ibm

[Jonah7]

I have ibm - is there really no treatment? Is it recommended to walk, despite the pain or is this harmful?

[ADP2010]

Have IBM but no pain. Priority is not to fall over - so suggest you walk with sticks etc.

[Tolkein]

Good morning while there is no treatment it is a good idea to exercise to keep unaffected muscles in good condition. My husband has IBM and we try and follow the exercises devised by a swedish medical study. I believe you can find a link to these on Myositis UK website. Let me know if not and I’ll find a link for you.

[Jonah7 in reply to Tolkein]

Would appreciate a link to the exercises.

[Tolkein in reply to Jonah7]

So the link is below. It takes you to the US Myositis.org. It is a generally helpful page about exercise and at the bottom you can click on the link under 'home exercse program' entitled presentation and you can print the exercise sheet out :

myositis.org/about-myositis....

There are also some Youtube videos about exercise as well.Our aim is to stay as healthy as possible and try to walk every day. IBM is a very personal thing in how it develops for each individual. It took a long while to get a correct diagnosis for my husband and for 18 months we were told he had motor neurone disease, so unusually for us IBM is a preferred diagnosis.

[Tolkein in reply to Tolkein]

Just another thought, if you wanted to have a further consultation about IBM. We weren't happy with the local hospitals help for us. We asked for a referral to Kings Hospital as we unerstood that was the best place to go. got to the appointment only to be told that the best place was Queens Hospital and have been referred there....

[Jonah7 in reply to Tolkein]

Yes, I was very unhappy with Walsgrave University hospital and transferred to Nuffield hospital . .

[Jonah7 in reply to Tolkein]

Just what I was looking for - many thanks

[Tolkein in reply to Jonah7]

Glad to help anytime

[Jo-Goode Administrator]

Arimoclomol trial completes this year & hopefully will be used as a treatment for IBM on the NHS clinicaltrials.gov/ct2/show...

[Jo-Goode Administrator in reply to Jo-Goode]

ucl.ac.uk/news/2016/mar/new...

[Jo-Goode Administrator]

cureibm.org/treatment/clini...