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IBM Inclusion Body Myositis

http://www.wikipedia.org/

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).
http://www.wikipedia.org/

FACEBOOK GROUP

Here is the link to a group you can join where friends can be made, stories swopped, questions asked and answered :
http://www.facebook.com/groups/7950401889/

Losing Muscle, Gaining Strength

Here is a link to a story written by Paul Leroux for the Good Men Project.

March 16, 2012

A degenerative disease is slowly sapping Paul Leroux’s strength. But he is more of a man than ever.

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

Losing Muscle, Gaining Strength — The Good Men Project.

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.

EMBRACING MYOSITIS (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.

If you are curious –  to read more about – me and my journey with Myositis go to www.myomusings.com  or contact me at daxslaven@comcast.net

Submitted by Dagmar Slavin  09-10-09
To walk or not to walk
that is the question

 I was diagnosed with Inclusion Body Myositis in 2000.
 I have been getting progressively weaker and have adapted my lifestyle to suit these changes. Never in my wildest dreams did I ever think that my strong healthy body would suddenly start deteriorating at such a rapid rate. It has now come down to partial use of my right arm only. My left arm and legs are “just there for the show” to prove that I was once healthy.
Please don’t get me wrong I am not complaining or looking for sympathy, but merely making a statement as a preamble to my explanation of how I stay sane and out of the depths of depression. The deterioration has been steadily progressive from sudden unexplained falling, to using a walking stick (still falling), to walker (still falling), to manual wheelchair (no more falling), to power wheelchair and hoist to bed, toilet etc.  At least I don’t fall anymore.
  I lived for years trying to stay mobile even though I was petrified of falling over or tripping over the most insignificant things or even sometimes just falling for no apparent reason. I would not or could not use stairs of any height unaided and even then I really struggled. My heart would beat so fast out of sheer fear of falling that it sounded like a jackhammer in my ears. I actually often wondered if others could hear it too.
 Then came instant relief to my plight in the form of my wheelchair. The first time I sat in it the sense of relief was almost overwhelming. I knew then that I should never fall again. Why I persevered for so long, while cracking ribs, toes, fingers, etc I will never know. All I had to do was put my pride in my pocket and accept that I had a serious problem.
 I could no longer drive and could also no longer work. I ran my own tiling contractor business and now couldn’t get on sites where the chance of falling over building material, or into foundation channels was very real. I tried to work from home on various projects like telesales, call centre operator and others but as the disease progressed it became more and more difficult to use everyday items that up to now I took for granted.
 Then I discovered that I could manage to type, with some difficulty yes, but nevertheless still type. I started corresponding with people all over the world who have the same disease – until my arms, after a few years, got too weak to type. My son then showed me a program on windows that provided access to the disabled. I found an onscreen keyboard where I could point to a letter and click. This was quite a slow process but I was back on line.
 Recently I upgraded my computer and loaded a trial version of Windows 7. This program also has an onscreen keyboard but with the extra advantage of predictive text. This has really speeded up my typing whereby I only have to type the first two or three letters before a word selection panel pops up where I can select a word or ignore and type in a word from a chosen dictionary. WOW what a difference.
 Now that I have an upgraded computer it has become my communication tool and keeps me occupied all day until my family return from work.
  1. 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
  2. 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.
  3. Email to friends all over the world
  4. Games to play until I am sick of them.
  5. 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 powachair@gmail.com
Submitted by: Roly Clulow 11-10-09

Charles McGlade says:

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

Acceptance before progress
 
If you speak to any recovering alcoholic or drug addict who has attended any form of rehabilitation, they will tell you that the therapists all want the admission and acceptance that there is a problem, before the healing process and rehabilitation can begin. If I as an alcoholic deny that I have a drinking problem or merely give verbal agreement to it, I may just as well never attend any rehab meetings. You see, the healing and rehabilitation process cannot begin or will be ineffective unless I as the alcoholic admit that I have a drinking problem and then accept the fact that help is required.
In the same vein, I as a disabled, otherwise abled or what ever you wish to call it, person, will struggle with rehabilitation and experience great difficulty with coping with the disease or disability. Denial and negativity are equally as damaging to the alcoholic as to the disabled person. Before any form of rehabilitation can take place we have to first ACKNOWLEDGE that there is a problem.
Then we need to ACCEPT that we have a disease or disability that can be lived with even if we cannot beat it. It took me three years to accept that I had an incurable disease called IBM Inclusion Body Myositis, and that no mistake had been made in the diagnosis. I visited every possible doctor or specialist that gave me any hope of a change in diagnosis, searched the internet for hundreds of fruitless hours, swallowed all sorts of potions and pills and read all the literature I could lay my hands on. Why I thought that the books or internet would give me any different information I don’t know. The rarity of my disease meant that in a lot of instances I knew more about it than my doctors. After my first visit with them they would hastily read up on the disease. Now I am not pointing fingers at any doctor because there is no man that could memorise all about the thousands of diseases that infest our planet.
Once acknowledged and accepted we need to ADAPT or lives and lifestyles to accommodate the disease or disability. It is a pointless exercise denying the problem and refusing to adapt your style of doing a particular thing. As an example, by persisting in holding a pen in the same way as you have always done just because you are too stubborn to change, you will succeed only in frustrating and annoying yourself and others. Adapt to a new style that accommodates the problem. You succeed in writing without the frustration, irritation and aggravation just by burying your pride in some available pocket. I kept having sudden unexpected falls while I persisted in denying that I needed walking aids. A walking stick, crutches and a wheeled walker all played their part, even though I still fell on the odd occasion, until I felt that my body could not take any more abuse and decided to use a wheelchair. I can still enjoy my life in a wheelchair providing that my attitude is positive.
Now to make all of this work for you, you need to have the correct positive ATTITUDE. A positive attitude will breed success and your trips to the “depression dungeon” will become fewer and shorter in duration. We may not be able to change the direction of the wind but if we adjust our sails we can certainly go where we want to go. I know that it is difficult to be positive all the time but as soon as you feel the negativity bug, you need to busy yourself with an interest like painting, writing, reading or whatever grabs your fancy. Doing this will take your mind off the negativity and remove the stress of the situation.
The happiest of people don’t necessarily have the best of everything; they just make the best of everything that comes along their way.
 Remember
ACKNOWLEDGE
ACCEPT
ADAPT
ATTITUDE
The arrogance or ignorance of the healthy.
It really didn’t help when people sent me magnets, elixirs, and books on astrology, while other demoralizing contributions were, this or that medicine and what I should have done earlier to avoid catching the disease, or various remedies and exercises to cope with or cure the problem……. I read this in some book or magazine “It is the unspoken belief of those who have never suffered from a chronic disease that it is somehow the patient’s fault that they have the disease”.
This is natural because people don’t want to believe that disease can randomly come to them. That somehow they can prevent it.
I am sure that most advice is well intentioned but I for one am growing tired of people advising me to eat lots of protein or other weird and wonderful foodstuffs (sort of along the lines of our ex health ministers take on fighting HIV) and join a gym when I can barely pick up a spoon to feed myself and would require a hoist to get me onto a gym machine. (No, not because I am overweight!), but because I have little to no muscle where it counts! I am sure that most disabled people have researched every possible avenue in search of the miracle cure, drug, diet or exercise. Not that we have suddenly become fountains of information but generally we are pretty clued up, after a while, as to what is good for us and what is not.
I am wheelchair bound, yes, but I am not mentally challenged or deaf (or so I thought), so it is not necessary to pronounce your words more clearly, speak slowly, shout or speak over my head to my care giver as if I’m not there.
It is a joy for me when people just offer to help and then wait for me to reject their offer or to tell them what I need, and in some cases, how to do it. There are times when I can manage “slowly” or when the maneuver is particularly complex and requires the help of someone who knows the procedure. We do need to feel comfortable and safe while carrying out certain drills, especially when transferring to or from the wheelchair.
In my short life in a wheelchair I have experienced a few problems that I would like to share with healthy friends that could help with communication.
Try to stand or preferably sit in front of the wheelchair. It is difficult to maintain eye contact if the person is behind or to the side. Craning the neck to look up is also very tiring.
Be careful with “advice”.  We have probably heard it all before. Most of us know as much and in some instances, with rare disease, we know more than our doctors. After having the disease for a while we would have exhausted most avenues of information in order to beat or subdue it.
Please offer to help if you want to, or wait to be asked, either way will do. Most of us have a particular way of holding or doing things to suit our various degrees of disability. Just be natural. In most cases we won’t break.
Over the years I have collected some thoughts from people that I correspond with from around the world (some positive, some negative, some sad) these quotations shed some light on how some of us feel at times.
* “You look fine” is only external. You have no idea how I’m really feeling
* I am scared about this thing that we know nothing about
* My biggest help was remaining positive
* This disease can control your mind. I want to be free of its power
* People around me have such perfect lives. I feel so alone.
* It is so hard to deal with this problem and live a normal life. I want so much to be as I once was
* If it wasn’t for the inconvenience and frustration of this damn thing it could almost be considered an honour to be a member of such a small, elitist group.
* I thought I could handle anything but I never considered this.
* The wonderful friends I have made make up for having this lousy disease.
All of us whether healthy or sick need support from friends and family. It only needs 2 people to start communicating and encouraging others to join and before you know it, you will be encouraging, helping and sharing advice with each other.
 

45 responses to “IBM Inclusion Body Myositis

  1. Jennifer

    January 22, 2013 at 6:32 am

    I was diagnosed with Polymyositis in Feb ’02. I lost my trunk motion your ability to go from sit to climb. The Drs. gave me 6m too live. My CPK were @ 30,000.They had me do a living will & basically get my house in order because I’d be going soon. Last year on Feb. 28,2012 I sent a mass txt out too family & friends Thanking God for canceling my expiration date. Through many years or all types of therapy~I discovered aquatic therapy was the Best because your weightless in water. I want who ever reads this too just be encouraged it’ll get better. God Bless! Respectfully Jenn

     
  2. Roly

    January 22, 2013 at 10:12 am

    Thanks Jenn,
    Why don’t you write a short story of your journey with PM and I will publish it on this blog.

     
  3. Annette Starr

    May 23, 2013 at 4:59 pm

    Thanks for all of your experiences. I was diagnosed with IBM about 5 years ago. I am a retired teacher, 77, and I live alone. I still drive, live an independent life, but with increasing difficulty.. It affected my neck muscles first, and I have not been able to hold up my head since. I now find that my legs are growing weaker. It is hard to walk, very hard to get up from a chair, and I find that I have pain with every step. I have not read about anyone else having pain. Is this an anomaly with me or it is part of the disease process? My neurologist sees me infrequently, smiles in an understanding way, but says there is nothing he can do. I have been through the Lymphodema and Cellulitis problems, hospitals and visiting nurses continue. But the pain which began about 2 months ago which does not respond to pain meds [Norco/hydrocodone] has me very concerned. Has anyone had similar pain with IBM? It is in the muscle of my right leg, in the hip to the thigh. Thanks for any comments or experiences.that might suggest the direction in which my disease is going.

     
    • Roly

      May 24, 2013 at 9:03 am

      Hi Annette, pain is present for a lot of IBM sufferers in various places. For more info.
      Take a look at the facebook group https://www.facebook.com/groups/7950401889/
      Inclusion body myositis ……. open group.
      They are a great group of people with sound advice.

       
    • Clifton Casteel

      April 29, 2017 at 11:06 pm

      I have IBM and was diagnosed three years ago. I was misdiagnosed with Polymyositis. I have severe pain in my muscles. I have lost muscle mass and some strength. I am 74 years and it took 27 doctors to finally make the correct diagnosis. My pain is brutal.

       
  4. Michael Harper

    August 12, 2013 at 9:37 pm

    My name is Mike Harper and my first indication that I had a physical issue developing came on an evening while I was on patrol. I noticed a strange sensation occuring in my thighs. It felt like someone was tapping on the anterior surface of both of my thighs at the same time. I blew it off as a meaningless twitch like happens with a persons eye occasionally.
    The next event also happened on duty. I received a dispatch for a person involved in a domestic dispute. Upon arrival a man fled from the location on foot. After checking the female victim I continued a foot chase of the fleeing male. I caught up to him about a hundred yards from the original location. I took him in custody but noted I was breathing very hard….could barely get my breath. I was used to running miles and feeling fine. This was a short sprint and I was breathing like an out of shape couch potato!
    I began to workout at the gym harder. I was thinking I had been spending too much time in the patrol car or behind a desk. I noticed during the next few weeks that walking up steps at the house and at the department that it felt like someone was holding onto my ankles. I continued to step it up at the gym. I just felt like I was losing ground instead of gaining.
    The defining moment came when I was in a local hospital doing a follow up investigation for a car crash victim. I was kneeling down in the lobby of the emergency department speaking to a family member of the injured person. I finished my questions and went to stand……and couldn’t! I was shocked, scared and embarrassed all at once. I leaned on an end table to push myself up. Walking to my car knowing something was definitely wrong with me.
    I made an appointment the next morning with my local general practice doctor. I was able to get an appointment that day. I explained and demonstrated my symptoms for her. She reffered me to a neurologist.
    following a several weeks wait, I met with this neurologist. He made me feel very comfortable as soon as I met him. After the same explanation to him as I had given my GP he calmly looked at me and said….you either have muscular dystrophy, ALS or Polymyositis. He then perfomed an EMG which was not conclusive. He then set up an appointment for a biopsy of my right quadricep.
    That was the next step in receiving bad news.
    The next day the results were called to me by theneurologist himself. He said he wanted me on a high dose of Prednisone as well as Cellcept to treat a diagnosis of Polymyositis.
    following 2 yearsof gaining weight, losing more muscle and strength I requested a second biopsy. You see…I had done a great deal of research for this disease and found my degrading conditions were an indication that I had been misdiagnosed.
    The second biopsy and tissue from the first test were sent to Indiana University Medical Center. It was determined that both sets of tissue were indicative of Inclusion Body Myositis.
    The symptoms had started in 2005 medical help was sought in 2006 with a misdiagnosis.in 2007 I resigned my position as a police officer, a job I had always wanted and loved doing. In 2008 I had stopped most of the meds…thank goodness…I then continued my research on the disease I had become a victim of.
    It is now August of 2013 and I am in a Permobil power chair, I have lost the use of the little and ring finger of my right hand, the left hand is following the right closely, we are now getting estimates for a bathroom remodel as I cannot get off the assistive comode very easy now.
    I am not one to quit on anything….I had my brothers put in an overhead ceiling lift in my garage to which I connected a rubber swing. I use the swing and lift to hoist me onto my zero turn mower so I can do that.
    We are now looking for camping supplies so we can try that again.

    We will be at the Myositis convention in Louisville in October…..hope to see you all there if you can come.
    Sorry about the typing….fingers not working well…lol

     
    • Roly

      August 14, 2013 at 10:35 am

      Thanks for the information Mike. Can I add your story to the site?

      On 12 August 2013 21:37, Living With Myositis

       
    • Annette Starr

      August 31, 2013 at 11:40 pm

      Officer Mike,
      One could expect nothing less of you as you continue the bravery and dedication you displayed as a police officer in your new role as survivor of this very rare disease. I can only imagine the battles you face so courageously each day with legs wasting away and arms showing the same symptoms. I thank God every day that my IBM is even more rare and I have no useful muscles in my neck so my head is on my chest. My world view is belt buckles, belly buttons, and below. (Someone suggested that I have a great title for a book on living with IBM.] But I can still drive, still walk, still go about living a somewhat normal life, and I feel so grateful, but also guilty when I complain because somehow I am betraying those who face the worst symptoms of this disease as you and so many others do with such courage and innovative ideas. My legs grow weaker, my arms begin to grow numb, but they still function — for now. And as we must, I carry on.

      Because I also have Lymphoma, I have added some infusions that may be helping: namely, IVIG once a month and Retuxen, a new form of chemotherapy, one month on and two months off. In addition, I am seeing an acupuncturist for the pain which results from struggling to hold up my head, and the back pain which also results from the strain of holding the head an inch or so off the chest. To see straight ahead, I must arch my back which renders me almost unable to move my legs for a moment or so as I try to right myself again. But my talented acupuncturist knows just what to do with me and I can feel the positive correlation between needle and the loss of pain. I don’t know if anyone would benefit from such treatment, but it has helped me and I believe in going forward with alternative medicine. My oncologist, infectious disease specialist, neurologist, and internist all have given the treatment varying degrees of thumbs up for the regimen.

      So, congratulations, fellow traveler on this journey to somewhere. Maybe we will make the disease a bit easier to bear for those who follow us. Continue to think outside the box and record your creative and innovative ideas to inspire all of us. And don’t forget to include the results of your exploits. Both in success and in failure allow us to be vicarious partners with you Officer Mike.

      Annette in San Diego

       
  5. Loretta Connolly

    August 22, 2013 at 6:04 am

    My name is Loretta Connolly and I live in Melbourne Australia.
    I have just found out in April 2013 that I have IBM .
    The time it has taken is 6 years of being told it was my age and sending me to other treatments and changing doctors many times I finally found one who listened and check me over and seeing the muscle wasting in the legs.
    It was straight to Neuro specialist and followed by muscle biopsy which confirmed it was IMB.
    Today I stumble on this page and it has been good to know how others are coping and managing their condition and it does help to see the courage that people have and hopefully I will do the same so thank you all for sharing..

     
    • Roly

      August 22, 2013 at 9:25 am

      Hi Loretta, Try this facebook group they are very helpful https://www.facebook.com/groups/7950401889/

      Keep well Roly

      On 22 August 2013 06:04, Living With Myositis

       
    • Ray Menzies

      February 16, 2016 at 2:30 am

      My name is Ray Menzies and I was diagnosed with IBM 3 years ago. I also live in Melbourne although I am on holidays at the moment. I am reasonably mobile and still drive a car. I am married and have 4 children. If you wish I would like to communicate via email and maybe catch up in person one day. I hope your health hasn’t deteriated too much since making this post. Email me if you want to communicate with me, in the mean time chin up!

       
    • Dale Harrigan

      January 17, 2017 at 11:40 am

      Hello Loretto, I also in Melbourne and have just recently been diagnosed with I me after spending the last five years being told I have peripheral neuropathy. Neurologist has me on methotrexate and prednisone but I am not hopeful of it doing ant good. I have just turned 70 and find myself struggling with everyday living. I was able to get by with a stick until recently but now don’t feel secure without the walker. I still go to the gym and for walks to try to maintain what I have but I am losing the battle.
      Have you found anything that helps you?

      Hope you are doing okay
      Dale

       
  6. Susanne

    September 4, 2013 at 4:42 am

    Just got the information about IBM and trying to learn more about it. Thank you for this site and the information

     
    • Roly

      September 4, 2013 at 8:56 am

      You are most welcome

       
  7. Denise Carmichael

    January 7, 2014 at 5:20 pm

    Hey my name is Denise and I am in the process of being checked for IBM. My doctor thought at first it was CIDP, but my meds were not doing what they should. So, he ordered muscle biopsies and that was not success! Just needed to share with someone. Oh, I am trying to watch my diet closer, I work out at the gym, keep busy around the house, and last I go to a nuero message therapist, she is awesome does a lot of studying on all of her patients. Please let me know of a great nuerologist! I will go wherever God takes me! Denise

     
    • Roly

      January 8, 2014 at 9:02 am

      Hi Denise, first let me say welcome to the site and secondly steer you to this facebook group http://www.facebook.com/groups/7950401889/ Where do you live. I live in South Africa and only know neurologists in Cape Town but there are many on FB from USA and Britain. Let me know if you don’t come right

       
  8. Gary Mahone

    March 17, 2014 at 4:58 am

    Reading each persons story has really been encouraging to me. My IBM was diagnosed in 2007. The first I noticed any problem was following a motorcycle accident in 2001. Nothing broken except my head. After several weeks of rehab I still couldn’t get up from a squat (I had played catcher on a mens softball team and had no problem with getting up from a squat) and I could no longer run without falling (I was a good base runner a few days before the accident). At first the doctors thought it was general weakness caused by the few weeks I had been bedridden. However, 2 years at a local gym, working with a trainer (who also did PT) and there was no improvement. It was about that time I finally saw a neurologist who did a muscle biopsy and determined I had some kind of Muscular Dystrophy. After many visits to OHSU (Oregon Health Sciences University) it was diagnosed as IBM. At the encouragement of a friend I made an appointment to see a doctor in Arizona who was developing a new piece of diagnostic equipment. The diagnosis clearly showed that there was some nerve damage in my lower back. She felt that the damage may have been the trigger that allowed the MD to become active. When I suggested that to the doctors at OHSU they basically blew it off as “junk science” and were quite sure that the accident had nothing to do with the development of the IBM but that it was just “coincidental”. My problem is this: They admit they don’t know what caused it but they are sure of what didn’t! It frustrates me that they won’t even take the time to investigate the possible cause. Bottom line, I do have IBM and it is progressing. I have determined to take advantage of the slow pace of its progress and learn how to adapt to each new limitation. The IBM has stolen my abilities to enjoy my hobbies of auto restoration and stained glass but has opened up a new hobby of Amateur Radio.It has not stolen the joy from my life and I’m learning it is better to cry over a loss than it is to get angry. I don’t do Facebook yet but may have to reconsider. Thanks for your time.
    Gary Mahone

     
    • Roly

      March 17, 2014 at 8:58 am

      Hi Gary, From all the information I have collected over the years, there has been nobody that could provide a definitive answer on the trigger but there has been a large amount of speculation. I have given up trying to get answers to questions that nobody has any clue how to answer. I am tired of knowing more about my disease than the average doctor so, like you, I concentrate my efforts on finding ways to accommodate each new progression. The FB group is a great help with advice from folk in the same boat, who have been there. Stay strong. Roly Clulow

       
  9. Gary Mahone

    March 18, 2014 at 7:53 pm

    Roly,
    Are you familiar with a new treatment for sIBM that has been given the fast track by the FDA? Its designation is BYM338. You can go to: clinicaltrials.gov/show/nct01925209 for info on locations for the clinical trials. One is approved for OHSU in Portland, Or. I have been in contact with them and have added my name to the list of volunteers. No date set as yet but I am hopeful to be chosen for testing. Let’s face it, I’ve got nothing to lose and, if it proves to work, then lots to gain.
    Gary

     
    • Roly

      March 19, 2014 at 8:27 am

      Gary, It wouldn’t help for me, I live in South Africa. Too far away 🙂

       
    • kathy

      July 6, 2014 at 3:34 pm

      Gary, I was diagnosed with IBM, four years ago. Could you share more with me about this clinical trial?

       
  10. Gary Mahone

    July 7, 2014 at 2:14 am

    Kathy, I recommend you go to the clinicaltrials.gov site shown in my first note to Roly. It will show you where the trials are being conducted. I know it is not up-to-date as I have been selected as one of 5 to participate at OHSU in Portland, Or. There are 60 U.S. sites, each can take up to 5 participants. More sites are world wide. The site explains what is involved and the requirements for participation. It is a double blind study and no one, not even the doctors, knows who is getting the drug and who is getting the placebo. At the end of year one that information will be made available to all participants, It is made very clear that there are no guarantees that the drug will help. The known side effects are fairly minimal but there could be others that are, as yet, unknown. Are there risks? Sure, but I feel it is worth it. Even if it doesn’t help me it may help others later on. By the way, mine was diagnosed in 2008 but, I believe it actually began in 2001. For me it has been a slow progression which has allowed me time to make adaptations to the losses that come with IBM. Frustrating? Yes! Hopeless? No! Hang in there.
    Gary
    P.S.

    If there is a test site near you I would encourage you to contact them as soon as you can to see if you can be included in the screening to see if you qualify for the actual trial.

     
  11. builder maryland

    July 10, 2014 at 2:34 am

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  12. Caroline Pearce

    November 28, 2014 at 1:04 pm

    Hi I would like to use a visual from your site for a piece on my company web intranet I am writing about CIDP, is this ok?
    Thanks

     
    • Gary Mahone

      November 28, 2014 at 8:21 pm

      Don’t recall a visual but feel free to use it, what ever it is.

       
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  14. Gary Mahone

    February 24, 2015 at 7:58 pm

    I don’t have a website or blog. Possibly Roly does, I really don’t know. I can tell you that I am participating in a double blind clinical trial of a drug designed to treat IBM. The testing is being done worldwide. The trial consists of a monthly infusion given at at the local research hodpital (in Oregon that is at OHSU, Hatfield Research Center). Next tuesday I will be getting my eighth infusion. So far, nothing to report. Either the med doesn’t work, the dose I’m getting is too low to have an effect or I’m on placebo. Being double blind, not even the doctors at OHSU have any clue what I’m being given. The first series of 12 infusions may be followed by a second series of 12. I’ll find that out after the 12th one. You can look the trial up on “clinicaltrials.gov”.
    Gary

     
  15. patricia

    March 24, 2015 at 1:02 pm

    hi roly, i am happy to read that South Africa has someon with ibm, my husband has been diagnosed with it.

    Regards Patricia my email pkhosana@mweb.co.za

     
  16. Anonymous

    June 19, 2015 at 1:04 pm

    Hi all

    Novartis is conducting a Phase III trial to be submitted to the FDA next year. The product is called BYM338 and has a fast track status since sIBM is regarded as an orphan disease.

     
    • Monica

      December 17, 2016 at 6:08 am

      My husband has been told he has IBM. I know he is getting weaker and I’m sorry but it has advance quite quickly. It was a year ago when he got the news. He has trouble swollowing, falls,and getting up from chairs etc. I would like to know what the approximate time he might have left before IBM takes him for good. I want to know how much time I have left to take him to the moon and back before its to late. I will do anything I can for him to have as much fun in life as possible before its to late. A lot of times, when you come down with something, they say you have —–so much time so get your affairs in order, I just wish someone could give me a little inside in this area. If anyone wants to talk to me, please email me…kletus1@hotmail.com. Thank you Monica

       
  17. Cirel Egelman

    July 6, 2015 at 12:16 am

    I’ve known for awhile but muscle biopsy just confirmed diagnosis of IBM. Awful depression.
    I am a caregiver for my husband. I don’t know how to handle this right now .

     
  18. Cliff

    November 19, 2015 at 6:11 am

    This is my first reading of your site. While it is sad to know so many are suffering, I am glad to learn how others are coping.
    I was diagnosed in 2002 but knew I had a problem in 1998. I tried to shoo a kitten from under my car and could not get up from a squat. Trips and stumbles were common. I wore braces to hold my feet up while walking, used a cane and finally after many tests walked into Strong Memorial in Rochester, NY. The Dr. Took one look and said I had IBM. It was confirmed by biopsy of left bicept.
    I am now confined to a power scooter (Hoverround) but can transfer myself with raised chair and commode. In 2012 and a few months prior I began having difficulty swallowing, and would actually aspirated on occasion. A feeding tube was placed in my stomach which I now use for all nutrition. I believe the swallowing problem affects about 1/3 of IBM folks. I would like to hear from others who suffer in that way to learn how you are coping. Of all my losses, not being able to taste food and eat a normal meal is the most difficult. It seems all social gatherings revolve around food or drink. My real blessing is that if I am very careful, I can sip coffee, which I have always loved. So I am going through all the stages of this disease and have not quite gotten through them all. I have a wonderful support team starting with my wife of 53 years, two great daughters and husbands, along with 5 grands and many friends from NY and now in PA where we moved to in 2009.
    Someone said”getting old is learning a series of adjustments”. I think we are all caught in that web with our uninvited friend IBM.

     
    • Gary Mahone

      November 19, 2015 at 8:15 pm

      Given your years of marriage I’m guessing we are about the same age (I’m 74). Symptoms first showed up following a motorcycle crash in 2001. Diagnosis of sIBM wasn’t made until 2007. I have depended on my Hoveround for two years now. Until I fell three weeks ago, I was able to negotiate in the house with a cane. Now the Hoveround is full time. I also depend on a powerlift for toileting and power recliner for a break from the power chair. So far I haven’t experienced problems swallowing provided I chew my food VERY well. Some minor problems with larger pills. Knowing what lies ahead is frustrating. On a positive note, I am one of 10 people in Oregon to be selected to participate in the clinical trial for BYM338 (240 worldwide). The bad news is that after 14 months of infusions I’m convinced that I am getting the placebo. Others in the trial are reporting positive changes – – not cures– but improved abilities. In December the trial goes into phase 3 and more of the same but, Norvartis indicates that “Open Label” will begin around next May when all participants will be given the most effective dose of the medicine. Just got to hang tough until then. Once approved by the FDA (if it is) it will become available by prescription to all who need it. Hang in there Cliff. Help may be on the way.
      Gary

       
  19. Anonymous

    November 19, 2015 at 11:33 pm

    Thanks Gary for your response to my post and for your participation in the trial. We all hope good things will come from it. It will be interesting to see if my docs mention the drug when it becomes available.
    Cliff

     
  20. Anonymous

    March 16, 2016 at 11:38 am

    From South England UK. My husband Roy was Diagnosed with dementia 8 years ago. Has slowly lost use of legs and fallen frequently and has had swallowing problems. . He will now be qmostly in a wheelchair. At last he has been recently diagnosed with IBM. This is as well as the dementia. I don’t understand the lack of diagnosis , at least in recent years…. IRIS.

     
  21. Iris Houghton

    March 17, 2016 at 3:11 am

    From south England UK again..I have just found out that it is a theory that some drugs can cause IBM..one of them is Cimetidine which my husband has been taking on hospital advice for acid stomach problems. Does anyone know if his muscle problems will reverse at all when he stops this drug. Or will it just get no worse and stay as it is. IRIS.

     
  22. Herbs Solutions By Nature

    June 16, 2016 at 10:21 am

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  23. GARY MAHONE

    June 29, 2016 at 9:58 pm

    The clinical trial for bym338 for the treatment of sIBM has been ended as of this morning. 6/29/2016 Norvartis had not achieved the results they were looking for. RATS! Back to the drawing board.

     
  24. Dr MJH Rahmani

    July 2, 2016 at 5:02 pm

    I am 54 years old male ,hospital consultant and was diagnosed with IBM in 2008 but I suspect I had this for as far as I can remember.I was slow to run,difficulty doing stairs,difficulty getting up from squatting.i joined Gym to improve muscle strength but no improvement and routine bloods showed raised CPK.hence referred to neurologist and muscle biopsy confiremd the diagnosis which was a massive schock to me as being a consultant, I myself had not heard about this condition!! My neurologists thinks I has some form of hereditary? sIBM with inlammatory component.so small dose of steroid steadies my walking a bit.I still can drive, can walk with someone with me or holding on to something for short distances .I have mild dsphagia,more with solids than with fluids for years but has not progressed.I was in a full time hospital job till March 2016 in UK.But I am not sure I can return to work full time following a fall in march 2016,suffering hamstring injury, which is very frustrating and depressing,but I think one has to accept and adopt as time progresses.I am now considering braces to gain some stability during walking and a mobility scooter for long distances.very anxiously waiting for the BYM338 trail outcomes and am happy to get enrolled in this trail that if UK is part of the trail

     
    • David

      July 3, 2016 at 7:47 pm

      Sibm is the most horrible words I have ever heard of I am also 54 years old I got the news in May 2013 that I have ibm there is a new trial starting a drug called arimoclomol I think this one will work for all of us well I hope so as we don’t have anything I am still on my feet and can walk but I am getting weaker all the time I am in the uk and have asked my mp to get more research done as there has not been a lot of work done on this horrible diesse

       
  25. wendygoecknerphotography

    November 25, 2016 at 3:53 pm

    My husband, Roger, was recently diagnosed with IBM after a former diagnosis of CIDP. IVG infusions and prednisone had no effect, so after a muscle and nerve biopsy, he received an inconclusive diagnosis of IBM. He is still mobile with weakness of his arms, legs and feet that has been ongoing a couple of years, and he used to fall occasionally but stopped taking Vitamin D and he has not fallen lately. The worst problem is swallowing and chronic coughing, and pooling of saliva in his throat. He swallows food better than swallowing liquids. After being sent to an ENT (Univ. Of Chicago) for his swallowing issues, the doctor also discovered a tumor on his tongue, which turns out to be a clinical stage 1 carcinoma. He will have surgery Nov. 30 and have a gastric feeding tube inserted at the same time. He chose this over radiation because of the number of side effects from radiation that could make his swallowing worse. As his support person, I am so scared how his extreme coughing is going to interfere with his immediate recovery in the hospital. I stumbled upon this website and I guess I’m just trying to understand IBM and to read and possibly talk to others living with the same condition. I adjusted our eating habits to eat more fresh foods, fish, beans, etc. a week ago to try to boost his immune system to get ready for surgery, but that just blew up in my face when the anesthesiologist phoned to say he was concerned because his potassium reading was extremely high at 5.9. That just made me feel bad for trying to help him and making it worse. Anyway, thank you for allowing me to vent. If anyone has words of advice or encouragement, my email is woohoopepper@hotmail.com.

     
  26. Anonymous

    January 22, 2017 at 9:18 am

    Thank you for creating this page. It gives you strength to know you are not alone in the struggle with IBM.

     
    • Iris Houghton

      January 22, 2017 at 12:38 pm

      Hello. I did notify you that my husband had died of IBM and to please remove me from your mailing list. Please now remove me from your mailing list. Please ! Iris Houghton Widow of Roy Houghton.

      Sent from my iPad

      >

       
      • Michael Harper

        January 22, 2017 at 4:31 pm

        Iris, at the bottom of the email is a link for you to click to unsubscribe from all future emails. I can’t do that for you or I would. Not sure why they haven’t removed your name from the list yet. I hope this helps.

         

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