I Have Inclusion Body Myositis

A Myositis, Inclusion Body anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Myositis, Inclusion Body. You're not alone. 118 People

    Ibm In The Family

    I'm a 54 year old male in Northeast Ohio and received the official diagnosis of IBM a week ago. It wasn't a major surprise to me. I had been very much aware of the disease and what it looked like for quite some time because my sister was also diagnosed with it several years ago...
    OhioJW OhioJW
    51-55, M
    1 Response May 15, 2012

    Out On A Limb ?

    Having been diagnosed with ibm, after enduring up to 30 falls.This disease has now made it nearly impossible to walk anywhere other than on level ground . I feel totally isolated .I would like to make contact with somebody in my area,to find out where im heading  .Location S W...
    chrischurch12 chrischurch12
    3 Responses Jan 18, 2012

    Mum With Ibm

    hello. my mum was diagnosed with ibm a year ago and is really stugglig to come to terms with it and isnt the woman she use to be. i think in her eyes life has ended as there is no point and she is quite happy sitting at home and wasting her life doing so. i want her to come for...
    lancashire86 lancashire86
    31-35, F
    5 Responses Apr 15, 2013

    This Stupid Disease

    I had symptoms of IBM when I was in my 20's. MY father and his brother had MD-Limb Girdle so I did not want to face it. We thought I had MD also. I had never heard of IBM except the computer..lol. In my 30's I started falling quite often and had a hard time going up stairs. I...
    michelleah michelleah
    46-50, F
    1 Response Nov 2, 2012

    Diagnosed With Ibm a Month Ago

    I have Inclusion Body Myositis and wish to compare some of my symptoms with others so inflicted.  I don't see much about pain in the information I have read so far.    I first was aware of a "problem" after several falls where my legs just gave out...
    gancho gancho
    11 Responses Jun 30, 2009

    Getting Weaker

    I was diagnosed with IBM two years ago.  It took 9 months after different tests and a muscle biopsy to get diagnosed.  I went to Mayo Clinic in Minnesota for a second opinion and tested up there alsoand it was confirmed I had IBM.  They had me try a drug called...
    ibmweak ibmweak
    4 Responses Jun 29, 2009

    Frustrated With Ibm

    I was diagnosed with polymyositis three years ago and was given IVIG treatments for six months and they were not effective.  I also had the Hepatitis C virus but it had been dormant since 1975 and the doctor told me it would not be a problem in life.  However...
    sufferingstill sufferingstill
    2 Responses Jun 22, 2008

    All Change

    I was aways a big strong girl/woman but I found myself getting weaker and unable to get up from a kneeling position.  Falling down was also a problem.  One doctor told me I had a problem with my knees and to take more exercise.  By this time I could hardly walk upstairs and...
    clareaziz clareaziz
    61-65, F
    Apr 30, 2012

    Living With Ibm The Disease Not The Technology

    I feel your pain and understand your situation. I will be sixty next week. I have been diagnosed for about 5 years with IBM. I was always an avid outdoors man, hunting, fishing, horseback riding, weekend farming, and a do-it-yourself handyman who could not accept the fact I was...
    gcn220 gcn220
    56-60, M
    3 Responses Feb 13, 2011

    Just Diagnosed With Inclusion Body Myositis

    I am 74 years old and always been active. Several years ago I started having tripping incidents. Also noticed a degeneration of the thigh and forearm muscles. 2 years ago I began testing to determine the cause. Had 2 EMGs, 3 MRIs, 2 CAT scans and blood tests. The blood tests...
    guyids guyids
    5 Responses Jun 8, 2010

    Ibm No Know Treatment

    I am a 59 year old African American male, was diagnosed with IBM in Oct of 2011. A very rear disease only 51 million people on the planet have this. I previously asked my Dr. about the weakness in my legs and he would tell me that I was getting older and needed to exercise. I...
    drawme0 drawme0
    56-60, M
    2 Responses May 9, 2012

    Moving Through

    This is actually the first time I have tried to tell my story all the way through. The last few weeks I have mainly side-stepped talking about it because most people seem to want to feel sorry for me and that is not what I want nor need. First of all I must tell you that I was...
    Oldpluto Oldpluto
    66-70, M
    Apr 15, 2013

    Inclusion Body Myositis Young Help Me !!!!!!!!

    I am 22 years old  athletic man and i am pretty certain that i suffer from IBM.All started three years ago since i first noticed atrophy on facial muscles i did MRi it was confirmed a small atrophy on the one side.The doctors thought about tringeminal neuropathy.It was not...
    lazaros108 lazaros108
    4 Responses Oct 8, 2010

    Ibm And Pain

    The medical wisdom seems to be that IBM is an illness of weakness not pain. But, I believe my experience is different. There are at least two areas of my body that have recurrent pain--sometimes severe. Medical tests have not provided any other plausible cause of the pain. I...
    stephenjohnsonphd stephenjohnsonphd
    6 Responses Jun 27, 2010

    Misdiagnoses For A Decade Or More

    IBM is a frustrating disease, as you all know. Until an orthopedic doctor suggested I go to a neurologist (a couple of years ago), I had never heard of IBM. I had a creatine test. Normal. EMG did show some abnormalities. Muscle biopsy showed non-specific abnormalities. I had...
    2 Responses Jan 28, 2013

    Is Exercise Good For IBM?

    You have no doubt had the experience... Feel you are losing muscle power, drop things or stumble unexpectedly, see your local GP who misdiagnoses you as having anything from carpal tunnel syndrome to simple ageing. The first specialist I saw was obviously overdue for retirement...
    gearme gearme
    70+, M
    3 Responses Aug 17, 2013

    Ibm And Me

    Hi there, I have been living with IBM for 10 years now.  I am a 64 year old retiree who has many interests, including playing drums with many other musicians on an ad hoc basis.  I am active in amateur radio, especially in WICEN, which is an emergency amateur radio...
    vk2gg vk2gg
    1 Response Jun 22, 2010

    I Have Found Two Clinical Trial Studies On Ibm

    My doctor recommended that I check out two current clinical studies for drugs to be used for IBM> One is with the drug Enbrel at Washington University and the other is a test of Rituximab in Paris. These studies and others can be found at clincaltrials.gov. There is also a site...
    stephenjohnsonphd stephenjohnsonphd
    2 Responses Aug 12, 2011

    I'm At My Weakest...

    I am 35 years old and was diagnosed with IBM about 2 years ago, although it is apparent that I have had it much longer than that. I also have dilated cardiomyopathy and congestive heart failure and am weighing 275 lbs and only 5 feet tall. When I first started getting weaker I...
    luckydog76 luckydog76
    31-35, F
    3 Responses Jan 2, 2012

    Service Dog

    I thought I'd come back today and mention one thing I'm working on to help me cope. Reilly is currently only 17 weeks old, but he is destined to be my working service dog, if all goes well.  Some others of you might wish to look into service dogs, too.  Reilly will be able to...
    MeggyZ MeggyZ
    Sep 4, 2011

    Ibm And Me

    I had Gillian Barre Syndrome 2004.  Not a fun experience, but I survived and recovered.  I thought I always had some residual nerve damage in my hands and feet, but nothing I couldn't live with.  The summer of 2008, I noticed my reflection in a full length mirror and my right...
    jollyjane1043 jollyjane1043
    Feb 7, 2012

    Adjusting To Ibm

    I am a 70+ male and was diagnosed with IBM and possible neurophy about 8 years ago. I still walk with a walking stick to correct my balance when necessary. Getting out of chairs under 24" is a problem and off the ground does not happen without help. A couple of things I have...
    GaryinTX GaryinTX
    70+, M
    2 Responses Dec 30, 2011

    Adjusting To Ibm 3 - Swallowing

    I recently had a barium swallow test and long talk with the doctor. Some of the things I Learned/Do: Food adjustments - Keep track of your problem foods Modify - Cut into very small pieces. Remove "chunks" i.e. gristle, stringy, hard pieces, etc Chew. - Chew, Chew...
    GaryinTX GaryinTX
    70+, M
    1 Response Jan 20, 2012

    A New Experience

    I have just recently been diagnosed with IBM (the original diagnosis was ALS, bu a second opinion and a muscle biopsy proved this to be incorrect).Don't really know too much about this disease as yet, and am curious to know how others are coping with it...............
    MiamiGrammy MiamiGrammy
    3 Responses Jul 11, 2011

    Eight Years Out And I Am In A Wheelchair

    I have entered stories in the past and my condition has progressed. About one year ago I had to leave home and enter a retirement community. Then I was still using a four pronged cane. I switched to a walker six months ago and now use a wheelchair whenever out of my apartment. In...
    stephenjohnsonphd stephenjohnsonphd
    Jun 8, 2013

    I retired Sept. 2010 looking forward

    for a wonderful retirement. I used to go to the gym 3 to 4 days a week, do a full body workout and jog 5 miles twice a week. I fished often and loved the outdoors. Jan. 2011 was diagnosed with IBM. It has been downhill ever since. I was wondering if anyone has talked to or knows...
    larryelawson larryelawson
    3 Responses Apr 10, 2014

    Keep A Positive Attitude

     I had arthritis since my late 20's, I'm now 62.  I had it pretty much in all my joints.  I started to notice I couldn't get up normally from a low sitting position, couldn't climb the steps like before.  Sometimes I'd watch people to see how they got up from...
    Avraq Avraq
    61-65, F
    2 Responses Jan 5, 2010

    Ibm And It Hurts!

    Hey! I am a 53 year old male that has lived with a diagnosis of Inclusion Body Myositis for a little over a year now. I was a logger for many years, and thought the weakness I was experiencing in my legs was due to a couple of logging accidents and a couple of back surgeries...
    martyr572000 martyr572000
    51-55, M
    3 Responses Jan 17, 2011

    Bill Gates Wannabe

    My story is not unusual as it begins with multiple falls. Fortunately, none wre serious enough to cause and fractures or severe damage.  After being misdiagnosed at the Cleveland Clinic in Florida, my neighbor and personal physician suggsted going to the Mayo Clinic here in...
    chipper69 chipper69
    Jul 9, 2010

    "It Was A Beautiful Sunny Day - Then That Happened"

    It was a beautiful sunny day. The sky was blue and the leaves on the trees (what was left of them) looked like they had been painted in shades of orange and amber. I had slept in a couple hours later than usual and woke up refreshed and rested. After a warm and lingering...
    rsalis rsalis
    51-55, M
    Nov 10, 2013

    Doctors now believe IBM was first detected with routine blood work when I was in my early 50's.

     I was flagged for high muscle enzymes & all my doctor's concerns were focused on my heart.  Later, a cardiologist determined that I didn't have a heart attack & said I simply tested high on the bell curve.  As I felt great overall, no one suspected any other possibilities at...
    GARoss GARoss
    1 Response Nov 6, 2013


    I in hindsight know I have had IBM for more than 10 years. It wasn't untill my activities have become so limited that I decided to have some checks rather than putting it down to getting older. After seeing my GP and then Neurologist,then having numerous scans and finally muscle...
    p51k p51k
    61-65, M
    2 Responses Aug 14, 2013

    Confused / Worried

    I have just been diagnosed with Inclusion Body Myositis - I know very little as to what to expect - My doctor has also said it is rare for a female and I am only the fourth female he has diagnosed.  I have not experienced any falls just extreme difficulty climbing stairs...
    duh1 duh1
    56-60, F
    3 Responses Mar 31, 2012


    I was just diagnosed we myositis can anybody tell me what this is my doctor didnt give me any thing on this subject.He just gave me the papers.Anybody have muscle weakness or fall down the stairs i did lucky i just bruised my leg.I have fibromyalgia rls to.Along with other...
    crazybird12 crazybird12
    41-45, F
    1 Response Aug 11, 2012

    It's Not All Warm and Fuzzy

    Ahhhh...where to begin? I'm 49 years old; nearly 50.  I've had symptoms for years.  I've asked doctor after doctor...and mostly been blown off.  Doctors commonly ignore what they see as 'middle-aged women syndrome'.  In other words, they think we're all...
    MeggyZ MeggyZ
    6 Responses Sep 17, 2008

    Dam Ibm

    As I watch my Mother at 74 deteriorate from an active lady to now a diagnosed IBM patient , it is frustrating and heart breaking. Her decline has been rapid (6 months) everyone's stories are so similar. The low dose steroid is only assisting with her swallowing, high doses of...
    Anjkindy Anjkindy
    1 Response Jan 4, 2012

    I am 58 years old. I received the diagnosis in

    2007 at Mayo in MN. I notice the slow weakening of muscle especially in the quads. It seems I fall quite frequently. I don't like falling as it usually hurts and my wife really gets upset. She has been after me to plan out the next steps as far as equipment I may need to get...
    SteveBinIA SteveBinIA
    61-65, M
    Feb 21, 2014

    I Do Deserve To Park There! Or....the Case Of Now You See Him - Now You Dont.

    It started out like any other Saturday.  The joy of sleeping in was followed by a delicious breakfast at our favorite breakfast restaurant.  The weather was palatable so the long wait standing outside on the sidewalk until our name was called to be seated wasn’t so bad...
    rsalis rsalis
    51-55, M
    2 Responses Dec 29, 2010

    About Inclusion Body Myositis

    A site for general information and research (ibmmyiositis.com). (clincaltrials.gov) I found the most usefull information I needed. We are going to win. Think Posidive.....Alvarenga
    70+, M
    1 Response Oct 30, 2011

    I'm Confused. Does This Mean The Diet Is Working?

    Let me preface this short story by saying, I’ve come to grips with my “condition.”  If I didn’t find a way to laugh at it, I think I’d end up pretty depressed.  So……in the spirit of making light of an inconvenience, I present you with my story. "I'm confused...
    rsalis rsalis
    51-55, M
    3 Responses Aug 29, 2011

    Could I Have IBM

    Hello My name is Lisa . My father had IBM and I don't know if it was sibm, fibm or IBM. I have been having severe pain in knees and thighs especially at night the pain is so bad I can't sleep , advil/Tyleno do not seem to take pain away. These are the only symptoms I have We...
    lisadmunoz lisadmunoz
    46-50, F
    Sep 7, 2013

    Just Diagnosed With Ibm

    Hi, I'm a 60 year old woman just diagnosed with IBM.  It was clear for the past several months that I had something of the sort, but they were trying to rule out everything else, had a slew of blood tests, MRI, etc.  Apparently the way the tell if it's PM or IBM is to give you...
    sunnyravenwood sunnyravenwood
    1 Response Nov 8, 2011

    The doctors think I have IBM.

    WAITING FOR APPROVAL FOR MRI and muscle biopsy. My forearms swoll up from 9 to 14 inches in circumference, with pain, extreme weakness and loss of use of fingers on both hands. I am being referred to a Neurologist by my Rheumatologist. I am so sad and scared. I am placing my dog...
    Indyess Indyess
    56-60, F
    Feb 28, 2016

    My Mother Has IBM

    My 85 year old mother was diagnosed with IBM 2 years ago. She falls every 2 weeks with no warning. Both of her knees just collapse on her. Does anyone know what we can do to keep her from falling? She has a lift chair, and a toilet commode. It is getting more difficult for...
    nanna8 nanna8
    3 Responses Mar 3, 2013

    Adjusting To Ibm 2

    Since my last post, I have noticed a couple more adjustments I have made. When using my booster cushion I noticed that I remove my shoes as it actually makes it much easier to go from setting to standing. I now tie my shoes loosely with double knots and a small bow so I can...
    GaryinTX GaryinTX
    70+, M
    1 Response Jan 3, 2012

    Pain? Ibm

    I have heard from my Cardiologist that pain is NOT associated with IBM and had that has been confirmed on several medical web sites which is how I happened to come across this forum. Nevertheless, I found "WD" web site which contradicts that no pain edict by following a hyper...
    bumps12345 bumps12345
    1 Response Sep 30, 2010

    I Am A Care Giver To My Spouse

    What have you done to make life easier for yourself and your spouse/friend that has IBM?
    jimter27 jimter27
    56-60, F
    1 Response Feb 16, 2010
More Stories