Inclusion Body Myositis

Inclusion Body Myositis is more common in men than in women and usually occurs after the age of 50. IBM usually begins with weakness in th muscles of the wrists, fingers and thinghs. The muscles that lift the front of the foot may also be affected leading to falls. In IBM the weakness may not be the same on both sides of the body. IBM is diagnosed only by a muscle biopsy, which will slow abnormal “inclusion” cells. Unlike PM, DM and JDM, in very rare cases, a form of IBM can be hereditary.

16 thoughts on “Inclusion Body Myositis

  1. Hello Everyone, My name is Eugene Garvey, I live in Conwy, North Wales and I was diagnosed with Inclusion Body Myositis (IBM) over two years ago. I have seen many medical people and advisors since I was diagnosed, but it took about 2/3 years for a property diagnoses – most of the medical experts in North Wales never heard of the disease, it took a Professor Cooper, who is based in Salford but holds a clinic in Aintree Hospital, to diagnose the IBM. I am very anxious to try and exercise the remaining good muscles I have, but physiotherapists here are giving me exercises for people with other neurological disorders, I don’t think that are appropriate for me. Has anyone been recommended exercises for IBM?

  2. Hello Alexandra, I am one of the admins on the site, so welcome! I also have IBM and Sjogrens, and I live in Eastbourne, Sussex. I also go to Kings and see the consultant and his team there, mainly once a year to Jo Reffin’s clinic, also see Patrick Gordon and the eye clinic for the Sjogrens. Its a bad combination having the two of the diseases together. I am also active with Muscular Dystrophy and the MDUK sponsors the MFSN, so we go to the regular Muscle groups (Ashford is closest to you) and to the annual conference. The MFSN as a group also has KIT (Keep in touch meetings) so if you would like to come along and meet like minded people you will be welcome, our next meeting is at Portsmouth on 11th June.

    David

    1. David. I am searching for news of Christine Nixon. I know she was unwell but I cannot contact her. Do you have any news of her. Mary

  3. Hello Patsy, I am glad you met us at Oxford, I was supposed to be there, but I got a flu last weekend so didn’t make it. I know Val has been in touch with you too. Thanks very much for your comments that you made on the “Tips & useful hints” page, I am sure that your vocation of retired Physio will come in useful to the group, so keep posting. However, your comments will come in most useful if you join the Facebook group as this is a closed group (where only the members can see posts and comments), I know Val will be there to help if you need assistance to join.
    Also, your comments on website are acknowledged, the website is very much a work in progress, so we will be making improvements as time moves on and funds allow.

    1. Hi, my name is Alexandra and I have IBM & Sjogrens Syndrome…I live in Edenbridge in Kent, its on the Kent/Surrey border and would love to chat to others with IBM..I recently had a multi-disciplinary day at King’s hospital and there I was introduced during the day to the Muscular Dystrophy charity. I am 56years old (recently!!) and hope to hear from anyone who would like to be friends and maybe meet up for coffee.
      Kind regards,
      Alexandra.

      1. Hello Alexandra, I have IBM. I live in Suffolk. Have you looked at our closed FB page. There maybe some people near you. We do have lunch meet ups and this is always a good time to meet others. We call them KIT. You can email me if you like . joy_walker@btinternet.com
        All the best Joy

    1. Hi Joy, I hope you got my email with my phone number. I’m a bit confused as I seem to be accessing two MFSN sites with different posts on them! My post is on one but not on the other! Which one should I use? I am interested to know if there are others living with IBM near me in South Dorset also possibly meeting others at the Information Day in Oxford on 21st March.

      1. Hello Patsy, I am replying as Joy is on holiday at the moment. This is the only MFSN website, although you may find others with a similar name. I don’t know if Joy has your previous e-mail, but it will be a couple of weeks before she is back. There will be at least 3 of us from MFSN at the Oxford Research update, Val, Rod and me, so we look forward to seeing you there.

        1. Hi David, thanks for your reply which I only picked up yesterday after we returned home from Oxford. I’m not sure if I actually met you or not at the Information Day? Anyway, I think I have confused the issue by referring to a different friends ‘website’ – what I meant was a different ‘page’ on the MFSN website. Sorry! However, there are 2 different pages that people are using for posts. I wonder if all the posts could be put on just the specific IBM page to avoid confusion for others and possibly missing some posts? I really enjoyed the Information Day and found it helpful and informative. Where do you live? I live in Dorset. Look forward to hearing from you again.

      2. Hi Patsyw.
        I know I have sent you an email and hopefully we will talk tomorrow. But I just realised we are having a lunch in Portsmouth HI on June 11th. Details are on here now.
        Anyway we can chat about it. Not sure how far it is for you. Although I will come from Suffolk.
        Hope to chat tomorrow. Joy

  4. Hi Joy, I am a retired Physio. I was diagnosed with IBM a few months ago, aged 70, by EMG and muscle biopsy. I am very interested in the support group and would love to chat to anyone my age with this condition. I am not on facebook or twitter but have online access and email. I am delighted to see your website will soon be fully active – a much needed resource.

    1. Hi Ann. Have you been a member of a myositis group before. I have IBM how can I help. I am also a member of the committee.
      Joy Walker

    2. Hi again Ann
      If you wish to get in touch send me an email.
      How long have you had IBM.
      This web site will be fully active soon so you will have others to contact as well.
      We have a closed group on FB.
      Joy Walker

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