Thank you for allowing me to join your group. I cannot locate a similar online support group up in Canada.
I was recently diagnosed with IBM on October 23, 2014 after six months of tests and a final muscle biopsy to confirm. I am 47 and live near Toronto, Canada.
I recently saw a rheumatologist who put me on 60mg of prednisone daily. I already notice a difference with my balance but I am anxious to start to work out and see if I can improve further. I have yet to find a physiotherapist who has dealt with this condition.
I am scheduled to see a 2nd specialist tomorrow who may have some direct experience as it relates to IBM so I can get a clearer treatment path.
I would like to hear from people with IBM to determine if there have been any success stories in terms of being able to build back muscle strength and/or maintain muscle strength.
I don't have IBM, but DM and have heard a couple success stories from IBM patients, so I hope you hear back from some on here!
I'm so sorry you had to go through 6 months of testing to find your IBM, that is so frustrating. Good luck with your appointment, let us know how it goes!
Hi there,
I was first diagnosed late October with IBM and just received the results from the muscle biopsy this morning. It’s confirmed IBM, was kind of hoping for one of the others. My symptoms started almost 10 years ago, trouble getting up from sitting, and not being able to go up steps. My Drs have been great and actually got me diagnosed pretty quick, less than 3 months.
I can’t get an appointment with my neurologist until January 26 though. I’m praying that he will try anything and everything. I’ve learned a lot following this site and I can’t wait until I can share my experiences too.
Currently, per all the docs I have seen there is nothing for IBMs. Novartis, the pharmaceutical company. is in stage 3 for testing that may be a magic bullet. The drug is called BYM 338. If you go to their website you should read what is going on and the current status of testing. Unfortunately there is nothing else out there. Regarding physical therapy, get a hold of a therapists who is part of the BYM 338 study and take it from there. Hope this helps.
I’m 44 as of now and was diagnosed in late May with IBM. I’m here to talk. Here’s my blog. Sums up the last year. I’ll be posting more soon nice the house is transformed. Be careful. Keep moving. Be careful. Keep moving. http://pdubvsibm.blogspot.com
Hi OtherMother, thanks for replying. Sorry it wasn't PM or DM.
Come to think of it I probably noticed awhile ago as well but didn't want to believe something was wrong. At the time I as also dealing with a herniated disk, which I thought was the cause of the weakness. But when my right side starting becoming weak out of the blue in May I knew something was wrong.
Had my appointment with a 2nd Rheumatologist who does deal with IBM. Put me on some additional health supplements, Vitamin D 3000iu, Coenzyme Q10 120mg/day and Creatine Monohydrate 3gm/day. I told him that the prednisone appears to be having an initial impact in terms of balance and strength and therefore he added those additional supplements.
In addition, the doctor is requesting a muscle MRI, a 2nd biopsy on my thigh (the first was near my left shin) and he recommended IVIG treatment, (can anyone comment on this treatment?)
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgGantibodies extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in four major disease categories:
Also recommended daily strength exercises of some sort, which I have been doing. anyone have a regiment they follow?
Take care,
Lou
OTHERMOTHER said:
Hi there, I was first diagnosed late October with IBM and just received the results from the muscle biopsy this morning. It's confirmed IBM, was kind of hoping for one of the others. My symptoms started almost 10 years ago, trouble getting up from sitting, and not being able to go up steps. My Drs have been great and actually got me diagnosed pretty quick, less than 3 months.
I can't get an appointment with my neurologist until January 26 though. I'm praying that he will try anything and everything. I've learned a lot following this site and I can't wait until I can share my experiences too.
Hi Morris, thanks for the reply. I had seen that study. Unfortunately I don't believe I saw any testing locations in Canada. I also didn't see any end date for the study, or I missed it? I'll look again.
Take care,
Lou
MORRIS BERGER said:
Hi,
Currently, per all the docs I have seen there is nothing for IBMs. Novartis, the pharmaceutical company. is in stage 3 for testing that may be a magic bullet. The drug is called BYM 338. If you go to their website you should read what is going on and the current status of testing. Unfortunately there is nothing else out there. Regarding physical therapy, get a hold of a therapists who is part of the BYM 338 study and take it from there. Hope this helps.
Pdub, enjoyed your blog. Great idea with the backpack. Could of used one in Greenbay, WI. My wife got us tickets to the Packers Patriots game two weekends ago for our 20th anniversary. I am the Cheesehead and she is the Patriot (really a Brady fan). I walked a lot that weekend and it took its toll, but I am glad I did. Just recently checked my ego at the door and applied for the parking permit. Hope to hear from you again.
Take care,
Lou
Pdub said:
I'm 44 as of now and was diagnosed in late May with IBM. I'm here to talk. Here's my blog. Sums up the last year. I'll be posting more soon nice the house is transformed. Be careful. Keep moving. Be careful. Keep moving. http://pdubvsibm.blogspot.com
I am in the UK and am a 73 years young man. (I try to pretend).
Anyway good news and bad news.....
IBM does move slowly and my experience is that it has accelerated over the last 4 years resulting in what I call wobbly leg syndrome. The good news although only diagnosed 4/5 years ago it probably started to be noticeable 10 years or more ago but I didn't recognise it...adaption is the key to maintaining mobility.
So suggest exercise sensibly and do all the stuff involving any "extreme" sports sooner rather than later.
Patrick, thank you for your reply. I appreciate the feedback.
I am curious to know how this discussion page is viewed. Are you able to see all my responses to other members?
Take care,
Lou
Pads said:
Hi New Member,
I am in the UK and am a 73 years young man. (I try to pretend).
Anyway good news and bad news.....
IBM does move slowly and my experience is that it has accelerated over the last 4 years resulting in what I call wobbly leg syndrome. The good news although only diagnosed 4/5 years ago it probably started to be noticeable 10 years or more ago but I didn't recognise it...adaption is the key to maintaining mobility.
So suggest exercise sensibly and do all the stuff involving any "extreme" sports sooner rather than later.