IBM Inclusion Body Myositis
Inclusion body myositis (IBM) is an inflammatory muscle disease, characterized by slowly progressive weakness and wasting of both distal and proximal muscles, most apparent in the muscles of the arms and legs. There are two types – sporadic inclusion body myositis (sIBM) and hereditary inclusion body myopathy (hIBM).
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Losing Muscle, Gaining Strength
Here is a link to a story written by Paul Leroux for the Good Men Project.
On March 6, 2012—Super Tuesday—I was diagnosed with inclusion-body myositis (IBM). Once rare, but now increasingly frequent, this disease causes the muscles of the arms and legs to weaken and deteriorate. IBM is more common among men than women.
Within five to ten years, I will probably need a leg brace, a cane, a walker, eventually a wheelchair. Mine is a rare form of IBM that also affects my hands. At some point, they will become useless to me. I will not be able to hold a cane or walker, not even a knife or fork.
The onset of the disease is slow and gradual. I had been noticing changes in myself for about a year and half. It took me longer to go places. I had trouble climbing stairs and getting up from a chair. I needed buses to kneel or to lower the ramp.
I had feared a worse diagnosis and prognosis, such as Lou Gehrig’s disease. Mercifully, IBM is not fatal or life-threatening. But it does pose serious problems in terms of quality of life.
It is hard for anyone in our society to accept such a prospect. Our society idolizes youth and beauty, health and strength. It dreads and fears the specter of weakness and infirmity, the creeping approach of age and death.
Men especially are socialized to be strong and independent, to rely on their own resources, to be the breadwinner and the pillar of their families. So it is all the more frightening for a man to find himself dealing with a degenerative disease such as IBM.
In the days since my diagnosis, I have become more keenly, sharply aware of others in similar circumstances. I have been more likely to notice others using assistive devices, or lurching along with an awkward gait. I have a greater appreciation of how much courage it requires to take another step forward, when you might fall flat on your face, or your next step might be your last.
The morning after my diagnosis, I recalled the words of Elizabeth I when she reviewed the troops at Tilbury, as the Invincible Armada sailed against England. “I know I am a weak and feeble woman,” she proclaimed, “but I have the heart and stomach of a king, aye, and a king of England, too.” I resolved to draw inspiration from that redoubtable monarch, whose life story so utterly fascinated me in my younger days.
In this American election year, I have also found myself thinking about two great presidents who faced physical challenges. John F. Kennedy wore a back brace and suffered from the early stages of Addison’s disease, necessitating cortisone shots. Franklin Delano Roosevelt was diagnosed with polio at the age of 39.
These two men achieved greatness despite (or perhaps because of) the obstacles they faced. Surely I can find the inner strength to maintain my quality of life for as long as possible. Surely I can be a profile in courage. Surely I can learn that “The only thing we have to fear is fear itself.”
In the 1939 classic Gone with the Wind, Ashley Wilkes says of those faced with a crisis, “The people who have brains and courage come through, and the ones who haven’t are winnowed out.” This is as true of an individual as it is of a society or a civilization. It is true of me, and it is true of every man.
READ THE FULL STORY HERE
JOHN MOZER’S STORY
Here’s my story. I was misdiagnosed with PM in 1990, and after 3 years of treatment with prednisone, my rhumetologist informed me that my PM had gone into remission. I was delighted and proceeded to put myositis completely out of my mind.
Then in 2004, I noticed that I was getting significantly weaker in the legs and arms and that I had several falls. I thought that this was due to my desk job and that I wasn’t getting enough exercise. So I joined a gym and paid for a personal trainer to work with me to improve my strength. After working out with the trainer 3 times a week for over a year, the two of us were frustrated by the fact that I had gotten no stronger.
During an annual physical in 2006 with my PCP, I mentioned this problem and he referred me to a neurologist. The neurologist did a few strength tests and then ordered a muscle biopsy. The results of the muscle biopsy confirmed that I have IBM. In fact, my neurologist believes that I have had IBM all along and that in my case it is progressing very slowly. However, it has certainly been progressing and I now need assistive devices to get up from chairs and toilets, go up steps, and to walk. I use a cane and stair lifts to get around the house and a rollator/walker when I am away from the house.
My neurologist has just given me a prescription to be evaluated for a power scooter. Right now, I don’t think I need a power scooter except for cases where I would have to be on my feet for long distances or long periods of time. We will see what they say. I should also add that I am very fortunate in that I have experienced no pain with my IBM.
See Dagmar’s website here http://www.myomusings.com/
It was in 1989 that I had my first encounter with an uninvited guest by the name of Myositis. As it is with most folks when you get the diagnosis of a rare muscle wasting disease, besides the initial shock, I was clueless as to what this would mean for me and my loved ones in the years to come. It did take some time, but slowly I learned to look at this uninvited guest not necessarily as my enemy but as a deceitful friend who on the one hand is constantly chipping away at my life with changes I could not have imagined, but on the other hand who has opened my eyes to perspectives of my life and on life in general that I would not have been open to before the diagnosis. Any growth is accompanied by pain and perhaps growing pains is a good description of my journey with Myositis. Anyone that suffers from a rare neuromuscular disease will be able to identify with: You have what??
My diagnosis of Inclusion Body Myositis is perhaps easier to pronounce than many of the other rare diseases that fall under the big umbrella of muscle wasting diseases that the Muscular Dystrophy Association of America has supported over the years.
Myositis, or inflammatory myopathy, as it is sometimes called, has the dubious distinction of being an orphan disease. This means that most folks, including some medical professionals, have never heard of it and probably will never meet anyone with this diagnosis. For the patient this all too often means years of either being told that the problem is all in your head or being misdiagnosed. It does help to know that there are three main forms of myositis: Dermatomyositis, Polymyositis and Inclusion Body Myositis and they all have distinctive features and different approaches to treatment. What they do have in common is muscle wasting. In Inclusion Body Myositis this is a rather slow progression but it is a relentless process. Over the years it will lead to total disability and dependence on others for your care.
I had to learn about Myositis the hard way, by being diagnosed and treated for Polymyositis for 9 years with the usual Prednisone and Methotrexate. Yet with each passing year I was feeling a little weaker. I desperately wanted answers and after some prodding, switching doctors and a second biopsy it was determined that in fact I had Inclusion Body Myositis. Sadly this misdiagnosis of Polymyositis versus Inclusion Body Myositis still happens a lot. IBM as it is called for short, is known to not be responsive to the drugs I was given. As matter of fact, there is no known treatment at this point for IBM that has lead to a remission let alone a cure. I was on these drugs for too many years when I did not have to be!
This year marks the 20th year of my having to come to terms with Myositis and in particular with IBM. In some ways I have grown in ways I never thought I would have to. I am watching others in their prime doing all the things I used to be able to do and never thought twice about, and now these things are beyond my reach. I recently read about a new movement called the ‘slow movement’ that supposedly is gaining a following. It is about folks feeling caught in the rat race who make a conscious decision to slow down their lives, to stop the hurrying, to breathe, observe, enjoy, relax and listen. I think I joined this ‘new’ movement years ago. IBM has forced me to slow down, to let go, to find out what is really important – to grieve when there is yet another loss to be acknowledged and then muster the will to go on despite the circumstances. I learned to celebrate the small victories that may be noticeable only to me and I learned to refuse to see myself as a victim.
In a way I see myself as fighting a war here, my very own personal war. A war – seemingly unwinnable, at least on medical terms. But in the end are we not all mortals? What really matters here is not if we win this battle but how we fight it. In this department we all do have a say. Is it my choice to be angry and bitter? (Believe me I have been there, too) To have myositis was not a choice I made, but how I deal with it is my choice. My choice of remaining positive against all odds is often the more difficult one to make. Our first instinct when we encounter something bad in our lives is to fall into a negative state and Wallow In Self Pity. I did have my share of ‘WISP’days, I will admit to that freely. When I learned and accepted that it is useless and counterproductive to rail against the things I cannot change, I also learned to invite love and light into my life. I learned that listening to a fugue by J.S. Bach helps me to sort out my mind. Good music and uplifting literature are food for our souls. It is important to read uplifting stories and poetry versus the daily papers with more than their share of negative news. And I want to remember to laugh and find humor whenever possible every single day. It did not happen overnight but over time I became proactive – I joined support groups and decided to learn as much as possible about Myositis.
Yes, Myositis has changed my life. It is an uninvited guest that clings to me but also has given me the opportunity to learn and grow. It taught me to pace myself, to prioritize, to respect and nurture my body. It taught me to spend my time with those whose presence I find uplifting and healing. It taught me to ask for help and to accept the generosity of family and friends. It taught me that it is a daily choice to be happy despite the circumstances I find myself in and to make the most of each day. I learned that it costs much less energy to smile than to become bitter – I have chosen to embrace Myositis, my deceitful friend whom I have to live with everyday and who keeps on stealing from me. On the other hand, Myositis has opened my life to so many other perspectives. Two years ago, with the help of my son I started a web page about my journey with Myositis. It has been a tool for me to come to terms with my disease and by sharing it on the internet perhaps I have given other Myositis patients a mirror to see themselves in my story.
- I struggled to open CD/DVD covers. Now all my CD’s are loaded onto windows media player (music at the touch of a button without having to struggle with loading CD or DVD
- Contact on line via Skype or Facebook – I can “phone” my friends for a chat. Hope I don’t get them into trouble with the boss.
- Email to friends all over the world
- Games to play until I am sick of them.
- I can draw, paint, make cards, certificates etc. Many other things if you have the programs or ADSL.
I am continually adapting my personal hygiene, eating, sleeping, sitting to suit each stage, and I have decided to leave the quest for a cure to the doctors and scientists that are researching the disease and rather concentrate my energies on finding ways of adapting to the changes as they occur. In doing that I have managed to stay sane and less of a nuisance to others.
I am happy to chat to anybody that wants to know more about the disease or just wants to chat you can reach me on firstname.lastname@example.org
Submitted by: Roly Clulow 11-10-09
I have just discovered your blog via the Faceboook Fight Myositis web site. Your writings have inspired me to tell my story.
I was diagnosed with IBM in 2007, but my first symptoms were in 2005.
My CPK was 5,000. My first fall was 2006.
I was hospitalized in 2008 from August to November when I could not walk anymore. Rehab got me to walk with a walker, but in the past year, I can only walk a few steps in my Invacare Get-U-UP lift.
I can not transition in the shower, so I have bed sponge baths . I have to be lowered and raised from the commode. All of this is done with my wife, who has been a saint.
I’m still able to get to work as an attorney with paratransit bus which takes me in my wheelchair to my office. My arms are much weaker, so I am being assessed for a power chair.
The weather- cold, damp days render me so weak, I can barely function. Long trips i the bus or train make me very weary. I was in the rehab with patients whose disease has finished them, so I’m grateful for every day I have. I had my 25th wedding anniversary. I got to see Game 1 of the World Series and my team NY Yankees won the series!
Keep up the good work and words! Peace to you and your family.
Charles from New Jersey USA
Submitted by Charles 13-11-09
- Clinical, pathological, and genetic mutation analysis of sporadic inclusion body myositis in Japanese people (springerlink.com)