I just found out I have myositis and I am freaking out! My doctor informed via MyChart so I asked for a teledoc appt. Any information you have is greatly appreciated. I have Sjogren’s Syndrome and I have been getting rash for five years. My leg muscles and top army muscles are always sore and I have trouble walking.
I am a white female and I just turned 70. On the outside I look very healthy but I feel terrible all of the time. My primary doctor told me I look really good for my age. LOL
2
Don W on
January 28, 2025
Hi Miss Susan,
I was diagnosed with with IBM in 2019. I am 67 now. At first I just thought I was out of shape. I went to and Orthopedic doc, because of atrophy in my left calf, thigh and knee. He sent me to the neurologist, and he did me do a battery of physical tests in his office, and said he thinks I have IBM. After a muscle biopsy on my left bicep, and results from a lab, it was confirmed. I still walk, but not for long distances. I do light exercises every day and try to stay away from a lot of sitting. I do light strength exercises and lots of stretching. I was wondering what types of physical fitness things you do daily.
Don W.
3
Pamela Wright on
October 5, 2021
Your story sounds familiar to me except I was on dialysis for 5 years and thought the weakness was from that. My left arm and hand are weaker than the right. This April, my legs gave out while using a walker and my body doubled back on itself. I fractured a bone in my ankle but all better now. No muscle strength in my thighs. Tried IVIG for 2 days, developed a fever and stopped that.
4
Hilary on
December 14, 2021
Oh my word this is like an echo of my story 😔😔 I believe I had had it al my life but about 4 years ago the strange symptoms began. My normal exercise routine would absolutely ruin me and simple tasks became huge challenges. I couldn’t brush my hair or climb the stairs. I would have flare ups of immense fatigue but I didn’t know what the flare up was. I am currently under testing for a full diagnosis. A time of very mixed emotions
5
Stephanie Cobb on
January 27, 2025
It truly was as if she was describing my situation. I started having symptoms around 2011 with difficulty swallowing then in 2013 my legs buckled and I fell down my cellar stairs— thankfully nothing broke just a concussion. No diagnosis until this past November we I finally got into the neurologist!! I like this site because there are people going through what I am so I don’t feel so alone!! Prayers they will come up with a solution soon
6
Bernadette Garvin on
January 2, 2022
Thank you for sharing your story as it really helped me , just several weeks ago I was given the diagnosis . Actually I been having symptoms for several years .
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ARLENE JOYCE Korte on
January 29, 2022
I WAS DIAGNOSISED 2000 WITH IBM. I WAS TOLD THAT I WOULD BE IN A WHEELCHAIR IN 10
YEARS BUT I DIDN’T GIVE UP TO THAT PREDICTION. I WALKED WITH A WALKER FOR 19 YEARS. I ATTRIBUTE THAT BECAUSE I BEGAN AN EXERCISE PROGRAM UPON LEARNING
ABOUT MY DISEASE. I NOW HAVE AN ELECTRIC WHEELCHAIR THAT ALSO WILL RISE.
MY LATEST PROBLEMS ARE MY WEAK HANDS AND SWALLOWING.
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Diana Lee Meehan on
February 20, 2022
I was just flabbergasted by Lisa’s story. It is my testimony, down to the hairspray. I am a 55 year old women who has experienced symptoms for 4 years prior to a pre-diagnosis. My doctor pre-diagnosed me with IBM in August of 2021. I have every symptom, other than the difficulty with swallowing. I am in the process of scheduling a muscle biopsi. I have pool PT twice a week. I live in Eastern MT so this strange disorder is even stranger 😄. I would appreciate a support group or information on what I can expect. I have so many questions. Like, is it normal to have good days when I feel stronger and then the following days go back to the weaknesses and fatigue? Does an anti-inflammatory diet help? Any help or information would be so appreciated.
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Don W. on
January 28, 2025
Hi Miss Diana,
I was diagnosed with IBM about 5 years ago. I pretty much do lots of stretching daily, light weight bearing exercises, and try not to do much sitting. I would be interested to know what fitness exercise you can still do.
Don W.
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Ellen Malamas on
March 17, 2022
Lisa you are an amazing lady and your attitude is so positive that it gives me hope. My dad was recently diagnosed and I am so devastated I don’t know what to do! Thank you for sharing your story. By the way, you are beautiful!❤
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Charles h gordon sr on
April 28, 2022
Interested in learning more about IBM from people Who are dealing with IBM. I have been diagnosed for about two years. Thank you
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Don W. on
January 28, 2025
Hi Charles,
I was diagnosed in 2019, but I started noticing weakness in legs and arms in 2017. Went to the doc, and after several tests to include a muscle biopsy, on my left bicep, it was confirmed.
I mostly do a lot of stretching and light hand weights. I am still able to walk, carefully, but I have to be careful of falling. I do some stationary bike stuff at home. I try to not sit around a lot. I do sit to stand stuff a lot, because that is one of the things that become difficult. What symptoms are you having as far as weakness?
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Linda M Puckett on
May 29, 2022
I have IBM and I m 61 and I stopped walking last year and also had lung Cancer. ANY help and reading material would be appreciated.
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Deborah Blevins on
May 30, 2022
My husband’s cousin was diagnosed with Myositis in 2020. He was unable to pull himself into his semi as he had in the past. He is white male mid-60’s. He has described a lot of the same challenges that you have or are going through. Like you, he has a great attitude. I have my own auto immune disease that I’m dealing with, Sjögrens so I understand what it’s like to have to live with an autoimmune that most people have not heard of and one that is poorly researched.
My thoughts and prayers are with you and those suffering from this disease!
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Kelley Chalker on
June 5, 2022
I have positive ana…suspecting myositis…attempting to educate myself
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Patricia Batker on
October 26, 2022
My mother had this disease and at 65 I am experiencing similar symptoms.
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Lynn Pierpoint-Mallet on
November 15, 2022
Thank you for sharing. Your story mirrors mine in so many ways. I was diagnosed in 2019 at age 54. I’m still working but planning my exit in Apr 2023 so I can move more often throughout the day vs. sitting. I still move between stages of denial, anger, depression – I can’t say I’ve accepted it yet. I have my days – it’s not fair. But I am trying. I have a good team of doctors but know there is no cure and I sometimes think – why bother? I feel such a sense of urgency in getting things done since I don’t know how much longer I have with quality of life. When that quality goes, I really do fear what my life will look like. I’m working hard at staying positive for now. Definitely not what my husband and I thought retirement would look like.
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Dee on
February 1, 2025
Please update …I’m on the same journey. I’m 53 years old, female still working. I teach high school and have 2 years before I can retire. I’m exhausted all the time! I exercise and I’m starting to follow the Mediterranean diet. How did you navigate the roller coaster of emotions? I’m feeling the same way, I’m single and taking care of two elderly, disabled parents. I need help finding my way and figuring out how to make the best of my life situation. Anyone… help!
Newly diagnosed
PS has can I find for disability or it is an impossible task ?
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Bernadette Bothe on
January 29, 2023
We live in Alberta Canada 🍁 and my cousin white male 71 years old became very ill and was admitted to the hospital Jan 2023. After the tests, he has been diagnosed with Immune Mediating Necrotizing Myopathy. They are doing a muscle biopsy as we speak to determine for sure the diagnoses. As you can imagine we are all in a state of disbelief, especially his wife and children.
You are upbeat and I am in awe of your strength and positivity and hope we get there also.
In the meantime do you have any suggestions for this life-changing condition?
Thank you
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Connie on
March 1, 2023
My son who has Down Syndrome also autistic has Myositis as well as Antisynthetase syndrome and other interesting conditions.
He is also non verbal….does use sign language, says a few word….very few…so understanding what he’s going through is difficult.
Just stumbled on these videos which will help me immensely understand just What is going on!…..huge blessing for me. We want to help him, which we’ve done with meds, etc., but knowing just what he’s feeling is major.
Wow…….Thank you!
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Kaaren Beuth on
April 13, 2023
I just wrote a message but not sure if it was sent..my details are
Below. I’d love to keep in contact with you Lisa..to share our journey.
Sometimes it’s very lonely. I was #30diagnosed with IBM in NZ in 2014. I think there are 300 at least now as the disease becomes more diagnosed.
Take care
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Michelle D Gravatt on
April 28, 2023
I was diagnosed 2years ago with polymyositis along with mixed connective disease and sjogrens. What a challenge this has been.
Started on methotrexate which has helped some. Problems with swallowing, very fatigued, in a flare up, I cant walk up stairs or even a curb, and unable to get up out of a chair. God forbid I fall, I’m like a beached whale. Amazing how others (even my own kids) think I’m just fine and this will pass.
I’m completely on my own so I do tend to feel sorry for myself at times, then work on trying to have positive thoughts.
Nice to hear from others and their struggles,
Guess I dont feel so alone and isolated.
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Cynthia Leedom on
October 31, 2023
Hi. I can relate to most of your story. I have been having symptoms and high CK levels. My muscles ache so bad it’s like I have done a work out but clearly hardly move some days.
I am just starting prednisone tomorrow 60mg 7 days then tapper off slowly every 7 days.
Kinda scared but more scared to not get help. Just hope it puts it to rest so I can be drug free and pain free. Pretty scared.
I am turning 69 and live alone so my mind over thinks every pain I get.
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QB on
May 10, 2023
Thank you so much for sharing your story. IBM has primarily affected my legs and was diagnosed in my late 40’s. I lost weight and started exercising regularly and my symptoms stabilized and even improved a bit. The effects of IBM has been episodic for me but have increased lately (I am now in my late 50’s). My mobility is significantly affected. I was able to retire two years ago and am trying to frontload vacations now while I can still get around with walking sticks vs a wheelchair. It reassuring to hear of a normal weight woman with similar struggles, I blame a lot of my symptoms on weight. I’m still working to accept my evolving reality
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Leslie haas on
May 13, 2023
Strange things were happening to me in my early 50s.2003. I was having trouble swallowing soft foods like pancakes,potatoes,bread.put up with it first then I was getting annoyed and went to the doctor. To make a long story short they dilated the problem in my throat and I was much better for about a year. They had no idea what caused it . They said it’s pretty common when you get older. I had three dialations after the first. Months, years, go by, and I would periodically take a fall here and there and they were traumatic. I hurt myself. I’m thinking, “I’m not paying attention or I’m getting clumsy,but when my knees started collapsing on me, I kind of started thinking something else is going on, what if it’s MS.the whole process was very slow .mind you, I was very active with projects I did ,working with drift wood and jewelry making and working in my little hair salon. I’ve always been strong and fit and I did notice my quads were shrinking(must have been slow too)Got an appointment with a neurologist who didn’t have a clue set me up with a neurosurgeon for a nerve and muscle biopsy. Diagnosed IBM.2014.Up until 2020 my weakness was pretty much in the legs but gradually my arms seem to be getting weaker much faster.unable to apply lotion(can’t get my hands flat.) wash my hair, pick up anything and raise it up above my head, I can still use my hands but getting harder to write
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Kevin Guest on
June 18, 2023
Hi Leslie,
I have exactly the same problems as you . I am in the why me stage and have a lot of fear, how long has your IBM taken to get you to where you are now, as this worries me as my dysphasia has started in my throat, and they seem to be worried about my head as I have had a few falls that caused head injuries, and I do have a brain fog. I also had 2 falls that caused a broken femur, then I did it again and broke the same femur as well as my knee needed replacing, thus I can’t walk properly, as well as the muscle wasting. If you could give me some idea of how long I’ve got?
Many thanks,
Kevin Guest
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Dawn on
August 30, 2023
Hello everyone! I am currently undiagnosed with myositis but after doing a bit of my own research and reading some of these comments on-line, much of all of this makes so much sense. Currently, I have noticed a number of so many of the symptoms you have all shared. (i.e., muscle weakness and pain in a lot of the same areas you’ve described . . . just to name a couple). I think I may have had this or something like it from childhood into my adult life. I’m currently 65 years old with a number of disturbing symptoms that just seem to be worsening. I am so beyond frustrated, as many of you seem to have been or are now. I have had abnormal lab tests, off and on, for years that have usually been dismissed because if I’m fortunate to have them run again, they sometimes come back “normal”. Then, when they do, they’re discontinued. Just to name a few, though: ANA, MGUS, CK. Lately, though, in the past couple of months I’ve experienced severe sciatica pain which I never had before. It’s not really a problem now but it took a good 4 weeks to improve. And, I’ve been struggling with a lot of knee pain that has yet to resolve. Sorry, long string of past and current symptoms that must sound like a total sob story but I feel something is being seriously missed here. If anyone would care to correspond with me and give me some suggestions in trying to convince those in the healthcare profession to take a second look at things, I would be forever grateful. Thanks for listening!
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Susan Gardner on
September 11, 2023
Leslie and Kevin,
Reading your stories is exactly what I have been going through. I was finally diagnosed this past July with Polymyositis. As I go back and think about the symptoms and signs, I have been having them for years. I started having a lot of lower back pain, to the point of not being able to walk or stand, last fall. Doctor sent me to physical therapy, which only made it worse. By June of this year I could barely walk, climb stairs, or stand. Dizziness to the point of falling and eventually passing out. Last passing out I fell and hit my fireplace and had to get 16 stiches in my arm. I was very lucky that it was not my head. Even now after being on steroids, if I fall, I cannot get myself up. I am getting some of my strength back due to the steroids, but what is going to happen when I come off of them? I cannot stay on them forever. They have me on high dose of steroids and other medications as well. I have had my throat dilated 3 times, and I will not have it done again, even with my difficulty swallowing. I am trying so hard to keep a positive attitude, but there are days when I struggle. If someone can give me an idea on what to expect. I know that the only thing I can hope for is to go into remission, but I am not finding many people going into remission. That being said, I have the same question Keving has, how long do I have?
Thanks for any and all information you can provide.
Susan Gardner
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Stacy on
September 25, 2023
I was just diagnosed with CADM. I am 41 years old and freaking out. I had the rashes on my knuckles and scratching for over 3 years thinking it was the soap. Dermatologist never realized what it was and I had been using prescribed creams and wearing cotton gloves in the kitchen thinking it was from chemicals or water in the glove. All started with 2 more rashes on legs a few months ago around May- that looked like tick or flea bites were inside the red circle and itchy 3 months. Did lime test, everything you can imagine and had nothing. Now it is gone with European salt water beach (August vacation) and back to NYC in September. They told me to not cancel my trip over this and we will see what it is when I get back. 30 vials of blood over 3 months later and continued positive ANA and regulated thyroid (I have hashimotos and dose has not changed for 8 years) led them to believe I have CADM. Never heard of it in my life before. Positive Ana twice between July and September 2023 to confirm it was a new auto-immune but doctors could not believe I have a sclerosis even though I have a lot of symptoms. I passed on not having MS (brain scan) and was very scared I had systemic sclerosis as they could not figure it out for 3 months what I have. I had an episode during last week of August humidity temps in NY- felt like 600 pounds and could not move. I was frozen in chair and needed to be pulled out. Next day I was walking slowly like a turtle and crawling up the stairs like a baby. FOr 2 straight weeks I have been fine like nothing happened, so I guess I learned what flare ups are. I never get sick, have not purchased caugh medicine since I was 14 and did not go to Dr. between 14 and 29 years ago when I got pregnant. Even vitamin D is high. I never get sick, Now my whole body hurts for days straight. I noticed when I am stressed about a job site it is worse and I can’t get out of bed. Stress def makes auto immune worse. I am only 41 years old and freaking out because I barely passed the breathing test a few days ago. I have 2 kids and 2 jobs, I keep thinking I am going to die of lung cancer because that is a correlated disease, no one knows why. I can’t leave them in the house debt and family business without me. I keep thinking if I die, my husband will lose the house on 1 salary and the grandmothers will be taking care of them. I keep thinking stupid crazy thoughts. I have been generally tired as a middle class New Yorker as it is, with 6 hours of sleep for the past few years. I wanted to think my body hurt from the lifestyle, but that was partially it. I have to do breathing test every 2 to 3 months. My culture is that women do everything in the house and drive kids around and still work 8 hours minimum and I feel fine moving all day except for random flare up days where I am frozen. Looking back at pictures I was always stiff with my back and left shoulder hurting, I thought it was from being rear-ended since I6 years ago but I am not sure if that is partially it. Why do I have weeks straight where I am fine and then days where I walk like a turtle and need my son to massage my back and shoulder? Why are lungs related to these aches and weird “can’t move” moments? I am slightly overweight for my height at about 29 bmi, but I am not like that heavy to feel that big those bad days. This is crazy and my family culture (immigrant parents) is to be written off or them to make up their own story of why I am how I am. Only 2 people know about this and I can’t tell anyone it is a lung cancer risk. Now I am reading it is also ovarian cancer risk. Nobody knows why. But this is very scary. I will start power walking in the mornings now when everyone is sleeping. I am stuck in the middle class rat race and we cannot afford house keepers and personal assistants so there literally is no time or money to go to trainers right now or pay someone to clean my house so that I can step out and lose work hours on top of it to work out. It just can’t happen. I tried during lunch our only to get ticketed every day for passing 25 mph to run back to the computer. I feel like I am stuck and going to die for no reason. But the good days I think this is all a joke. I don’t know what to do.
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Louise Sharps on
October 27, 2023
Hi to all of you lovely people !
I was diagnosed with
Lupus in ’95, but I was never informed.
It’s affected all of my major organs & I have neuro problems, hemiparis, heart and kidney problems. Right kidney working at 45 %.
I fall a lot, but I don’t realise when I’ve a fracture.
I walked on a fractured heel for a month, 10 days after a fall, a fractured elbow. I htotal gut dysmotility & have haf three ped-j feeding tubes.
Indeterminate Colitis, anaemia, (I’m on B12 shots). Also have frequent falls, & not able to get off the floor. Rheumatoid arthritis, Scleroderma and mixed connective tissue disease, hemiparis, lower limb paresis. Mitochondrial myopathy Lupus. Handdıe tremors & spasms externally and internally, brutal, you have to wait for the spasms to subside, your trapped, oesteopania , lower limb paresis. My oesophagal valve has gone, so I have to be careful, as the food becomes trapped .
The nes diagnosis regarding my Lupus, I just thought it was ordinary Lupus.
It’s not, I have Mitochondrial myopathy Lupus.
If the doctor’s had informed me about my Lupus in ’95, I’d not be in the state I am today.
Due to no treatment for over twenty years, I asked my rheumy about going on a biologic treatment, my rheumy said that I’m too far gone & a biologic treatment with kill me !
I have had muscle biopsies on both of my thighs.
These showed ragged red fibres & blur cox positive fibres, that was over 10 years ago. I’m on double elbow crutches, have frequent hypos as my gastro delay is over 14 hours !
If it’d not been for a bad bout of costocondritis, fives years ago, I was lucky. My doctor checked my bloods & I tested positive for RNP1 & Anti – Smith smooth antibodies. I’m on over 50 tablets a day.
I’m lucky to still drive a automatic car. I have carer’s twice a day.
All of my clothes are pull on. Not able to put my clothes on or off,due to the weakness in my arms and legs. I aslo have muscle wastage, I s this common with this ? I think that if your determined to note cave, ( never been a option from my point of view) !
Positivey is a magor key.
I have to eat cleanly, it lowers your inflammatory levels !
You can check out the foodmap diet, or you can check out the rainbow diet !
I’ve just returned back from being away on holiday.
Aguy, trod on my foot and ankle. The hospital put me in plaster & I now have see the orthapaedics . I’d not wish this upon anyone !
I’m a optimist, so I’ll keep pushing myself, every single day! !
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Johnnie Sabisch on
December 9, 2023
Hi my name is Johnnie am a63 year old female I have had back problems science I was forty and just managing the pain. But around 2014 I started getting knee pain and that pain was the worse so in May of 2017 I had my knee replaced. After I woke up from surgery my leg was killing me. I kept trying to tell them. between all the medication from them and some of my own I went into a delirium and when the new nurse came in she said she could hear me moaning in my delirium so she took off my leg wrap and I was immediately relieaved. So I went through the physical therapy and I started getting better. About 5 weeks after I was getting into a car and didn’t know the glove box was opened and I hit my calf on that and I about went into cavaulsions with pain. I went back to the doctor who did my surgery and that was his last week of practice because Molina my insurance company closed the building where he worked for them. So I was on my own. I was sent to another Orto doctor and he said I needed a revision after an X-ray. I left in a hurry. I had that bruise for two of three months. I got better after some months. Then I started having knee pain in that knee and went to a top Orto doctor and he went through a bunch of tests and thought is was all in my back with a guess. I got shot in my back and all the pain was gone. So I went to work in my flower bed where we had just cut down a huge trumpet vine bush where are the birds lived and slept and not realizing the danger of all the bird poop getting into my lungs. before I had surgery for my knee I went to a pulmonologist to get cleared for surgery and he cleared me but wanted to keep following up. So while my ESI was working I was so happy to not be in pain I went nuts outside because I hadn’t been that pain free in years. I went for a CT scan for my chest and the pulmonologist said it looked like I had chicken disease nodules I told him I don’t have chickens and went on my way. My next visit with my family I asked him about the nodules he said it was just inflammation so I dismissed it. A few weeks later something hit me so hard my arms and hands were covered with bruise spots and my legs swelled up I couldn’t catch my breath and my calf muscle just went nuts I was dilapidated. My family pcp which by then was a PA he thought I had CHF so I had to get checked and it wasn’t that. I started going to every doctor in the world and my leg pain was so bad every where I went no matter what doctor I seen couldn’t find it. They would do X-rays and dopplers on my leg and send me on my way. The trip to the hospital they kept over night for observation and by then you couldn’t even touch my leg without it killing me. they sent me home with a weeks worth of kelflex for cellulitis. When I got out of the car to get home my leg broke. My daughter and husband picked me up after crawling up the stairs. So I ordered mea walker so I could get to the bathroom and get back in forth to bed and recliner. I saw the show chasing the cure and I thought I had some kind of edema so I made an appointment with an and he said he could not help me I needed vascular I told him I have done been there an what does that have to do with my leg bone because by then that was all I thought about so he ordered another X-ray of my leg and it was broke. Something ate my leg in half. So ortho trauma calls me on Labor da and tells me to get there and see about this leg. My leg is screwed it is bent and deformed and it wouldn’t heel. Nobody would give me a dx. I went to my PCP and demanded some antibiotics I told him through my own study I needed long term ones. So he gave me Bactrim and after two years my leg break finally started to heal but there is still something wrong I still have all these random symptoms You can’t touch my leg calf without pain, I can’t swallow right, I still have these purple blotches all over my arms. and on top of that when I was going through all that my daughter was getting married in November and I got up to make some treats for her shower and a jar fell on my foot and I about died. My foot swelled up and I got a on the top of my foot and with what I was going through everything with this leg every time something would hit it I would get hematomas that would burst and put holes in my legs. I would set and clean the litter box I got an infection in one of the holes in my leg and caused an infection so I was hospitalized for five days with antibiotics and then sent home on them. every day for about the next five days the top of my foot started turning black I had a appointment with my PCP and I thought I would show it to her but that day while I was getting ready to see her it busted. I was so grusume I had to back into hospital and made sure they cultured it and it was Pasturella from my cat. So I spent another five days in the hospital and that was finally over. Then Covid hit and once again I was screwed. the only time I fill ok is with a steroid shot in my back. I have had to sign waivers to get this shot because the can’t get it together over at my doctors with pre-auth. Along the long ordeal I have been on is the my lungs got crazy I got real sick and ended up in the hospital for co2 poison. I was very ill. I want my leg fixed and to scared to let the surgeon touch my leg before a DX. When the shots where off I get bone morrow edema and my leg is getting stress fractures that are very painful so I just sign another waiver. I’m sorry for rambling on but I have been going through this since 2018 until now and this is my first attempt at putting it all done.
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lbroyden on
March 20, 2024
My daughter was diagnosed with this at age 19. She is now 22. We were hoping that it was maybe the juvenile form and it could be managed, and she could have her life back. However, it does not seem to be responding to even the biggest medications and we have her managed by specialists at Duke University.
Does anyone have any information about the juvenile form? At this age it seems more likely, but again no one knows.
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Linda Kobert on
March 20, 2024
Juvenile myositis (JM) is considered its own form of myositis, even for those in adulthood. Duke Children’s Hospital has one of the best myositis centers of excellence for JM. Dr. Anne Reed runs the center, is a former TMA medical advisor, and is very knowledgeable. She also has a program for transitioning children with myositis from pediatric to adult care. You might ask to consult with her or her team to find the best care for your daughter. https://www.curejm.org/centers-of-excellence/
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lbroyden on
March 20, 2024
Thank you Linda . They did a gigantic blood test to determine subtype, and even sent it off to Johns Hopkins, but it came back “inconclusive”. They have never been able to determine juvenile versus adult, but her age would seem that way she would be more on the juvenile end .. that seemed a little more hopeful anyway. However no one has said either way. I don’t think anyone knows. Any other other ideas and how we could figure it out? It seems that if we knew exactly what it was, that would help treat it.. She was only 19, she is 22 at the time, but this thing is aggressive and relentless. Of course I want to leave no stone unturned, at this very point, things are very rough for her. All input is good input.
I will follow your leads on the lady at Duke. We were just there, and worked with a Dr. Anderson, but no other options were offered. It’s just too far for us to drive. We live in Blacksburg, Virginia, which is about a 3 Hour drive .
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Renee on
November 23, 2024
I am 70 now was diagnoised in 2016 with Inclusion Body Myositis, Polymyositis, Lupus and Sjogrens. My doctor wants me to try ivig.
Anyone tried and had any positive or negative results?
36
Frank McGraw on
January 27, 2025
Just finished reading 31 case studies. I noticed two omissions. First, nobody mentioned the fact that IBM is not symmetrical. Test right leg/arm versus left using a curling exercise or leg extension machine. That fact led me to a neurologist who did the blood tests, 14, and a muscle biopsy. Second, those diagnosed with IBM did not mention exercise. Exercise has allowed me to stabilize my symptoms. Exercise allowed me to continue mountain biking and to lift till diagnosed at 80 yrs.old. Exercise was proven by a Swedish doctor back in the teens. At least get the blood tests, and muscle biopsy, and if positive start exercising your whole body, with weight machines, at your local gym.
I just found out I have myositis and I am freaking out! My doctor informed via MyChart so I asked for a teledoc appt. Any information you have is greatly appreciated. I have Sjogren’s Syndrome and I have been getting rash for five years. My leg muscles and top army muscles are always sore and I have trouble walking.
I am a white female and I just turned 70. On the outside I look very healthy but I feel terrible all of the time. My primary doctor told me I look really good for my age. LOL
Hi Miss Susan,
I was diagnosed with with IBM in 2019. I am 67 now. At first I just thought I was out of shape. I went to and Orthopedic doc, because of atrophy in my left calf, thigh and knee. He sent me to the neurologist, and he did me do a battery of physical tests in his office, and said he thinks I have IBM. After a muscle biopsy on my left bicep, and results from a lab, it was confirmed. I still walk, but not for long distances. I do light exercises every day and try to stay away from a lot of sitting. I do light strength exercises and lots of stretching. I was wondering what types of physical fitness things you do daily.
Don W.
Your story sounds familiar to me except I was on dialysis for 5 years and thought the weakness was from that. My left arm and hand are weaker than the right. This April, my legs gave out while using a walker and my body doubled back on itself. I fractured a bone in my ankle but all better now. No muscle strength in my thighs. Tried IVIG for 2 days, developed a fever and stopped that.
Oh my word this is like an echo of my story 😔😔 I believe I had had it al my life but about 4 years ago the strange symptoms began. My normal exercise routine would absolutely ruin me and simple tasks became huge challenges. I couldn’t brush my hair or climb the stairs. I would have flare ups of immense fatigue but I didn’t know what the flare up was. I am currently under testing for a full diagnosis. A time of very mixed emotions
It truly was as if she was describing my situation. I started having symptoms around 2011 with difficulty swallowing then in 2013 my legs buckled and I fell down my cellar stairs— thankfully nothing broke just a concussion. No diagnosis until this past November we I finally got into the neurologist!! I like this site because there are people going through what I am so I don’t feel so alone!! Prayers they will come up with a solution soon
Thank you for sharing your story as it really helped me , just several weeks ago I was given the diagnosis . Actually I been having symptoms for several years .
I WAS DIAGNOSISED 2000 WITH IBM. I WAS TOLD THAT I WOULD BE IN A WHEELCHAIR IN 10
YEARS BUT I DIDN’T GIVE UP TO THAT PREDICTION. I WALKED WITH A WALKER FOR 19 YEARS. I ATTRIBUTE THAT BECAUSE I BEGAN AN EXERCISE PROGRAM UPON LEARNING
ABOUT MY DISEASE. I NOW HAVE AN ELECTRIC WHEELCHAIR THAT ALSO WILL RISE.
MY LATEST PROBLEMS ARE MY WEAK HANDS AND SWALLOWING.
I was just flabbergasted by Lisa’s story. It is my testimony, down to the hairspray. I am a 55 year old women who has experienced symptoms for 4 years prior to a pre-diagnosis. My doctor pre-diagnosed me with IBM in August of 2021. I have every symptom, other than the difficulty with swallowing. I am in the process of scheduling a muscle biopsi. I have pool PT twice a week. I live in Eastern MT so this strange disorder is even stranger 😄. I would appreciate a support group or information on what I can expect. I have so many questions. Like, is it normal to have good days when I feel stronger and then the following days go back to the weaknesses and fatigue? Does an anti-inflammatory diet help? Any help or information would be so appreciated.
Hi Miss Diana,
I was diagnosed with IBM about 5 years ago. I pretty much do lots of stretching daily, light weight bearing exercises, and try not to do much sitting. I would be interested to know what fitness exercise you can still do.
Don W.
Lisa you are an amazing lady and your attitude is so positive that it gives me hope. My dad was recently diagnosed and I am so devastated I don’t know what to do! Thank you for sharing your story. By the way, you are beautiful!❤
Interested in learning more about IBM from people Who are dealing with IBM. I have been diagnosed for about two years. Thank you
Hi Charles,
I was diagnosed in 2019, but I started noticing weakness in legs and arms in 2017. Went to the doc, and after several tests to include a muscle biopsy, on my left bicep, it was confirmed.
I mostly do a lot of stretching and light hand weights. I am still able to walk, carefully, but I have to be careful of falling. I do some stationary bike stuff at home. I try to not sit around a lot. I do sit to stand stuff a lot, because that is one of the things that become difficult. What symptoms are you having as far as weakness?
I have IBM and I m 61 and I stopped walking last year and also had lung Cancer. ANY help and reading material would be appreciated.
My husband’s cousin was diagnosed with Myositis in 2020. He was unable to pull himself into his semi as he had in the past. He is white male mid-60’s. He has described a lot of the same challenges that you have or are going through. Like you, he has a great attitude. I have my own auto immune disease that I’m dealing with, Sjögrens so I understand what it’s like to have to live with an autoimmune that most people have not heard of and one that is poorly researched.
My thoughts and prayers are with you and those suffering from this disease!
I have positive ana…suspecting myositis…attempting to educate myself
My mother had this disease and at 65 I am experiencing similar symptoms.
Thank you for sharing. Your story mirrors mine in so many ways. I was diagnosed in 2019 at age 54. I’m still working but planning my exit in Apr 2023 so I can move more often throughout the day vs. sitting. I still move between stages of denial, anger, depression – I can’t say I’ve accepted it yet. I have my days – it’s not fair. But I am trying. I have a good team of doctors but know there is no cure and I sometimes think – why bother? I feel such a sense of urgency in getting things done since I don’t know how much longer I have with quality of life. When that quality goes, I really do fear what my life will look like. I’m working hard at staying positive for now. Definitely not what my husband and I thought retirement would look like.
Please update …I’m on the same journey. I’m 53 years old, female still working. I teach high school and have 2 years before I can retire. I’m exhausted all the time! I exercise and I’m starting to follow the Mediterranean diet. How did you navigate the roller coaster of emotions? I’m feeling the same way, I’m single and taking care of two elderly, disabled parents. I need help finding my way and figuring out how to make the best of my life situation. Anyone… help!
Newly diagnosed
PS has can I find for disability or it is an impossible task ?
We live in Alberta Canada 🍁 and my cousin white male 71 years old became very ill and was admitted to the hospital Jan 2023. After the tests, he has been diagnosed with Immune Mediating Necrotizing Myopathy. They are doing a muscle biopsy as we speak to determine for sure the diagnoses. As you can imagine we are all in a state of disbelief, especially his wife and children.
You are upbeat and I am in awe of your strength and positivity and hope we get there also.
In the meantime do you have any suggestions for this life-changing condition?
Thank you
My son who has Down Syndrome also autistic has Myositis as well as Antisynthetase syndrome and other interesting conditions.
He is also non verbal….does use sign language, says a few word….very few…so understanding what he’s going through is difficult.
Just stumbled on these videos which will help me immensely understand just What is going on!…..huge blessing for me. We want to help him, which we’ve done with meds, etc., but knowing just what he’s feeling is major.
Wow…….Thank you!
I just wrote a message but not sure if it was sent..my details are
Below. I’d love to keep in contact with you Lisa..to share our journey.
Sometimes it’s very lonely. I was #30diagnosed with IBM in NZ in 2014. I think there are 300 at least now as the disease becomes more diagnosed.
Take care
I was diagnosed 2years ago with polymyositis along with mixed connective disease and sjogrens. What a challenge this has been.
Started on methotrexate which has helped some. Problems with swallowing, very fatigued, in a flare up, I cant walk up stairs or even a curb, and unable to get up out of a chair. God forbid I fall, I’m like a beached whale. Amazing how others (even my own kids) think I’m just fine and this will pass.
I’m completely on my own so I do tend to feel sorry for myself at times, then work on trying to have positive thoughts.
Nice to hear from others and their struggles,
Guess I dont feel so alone and isolated.
Hi. I can relate to most of your story. I have been having symptoms and high CK levels. My muscles ache so bad it’s like I have done a work out but clearly hardly move some days.
I am just starting prednisone tomorrow 60mg 7 days then tapper off slowly every 7 days.
Kinda scared but more scared to not get help. Just hope it puts it to rest so I can be drug free and pain free. Pretty scared.
I am turning 69 and live alone so my mind over thinks every pain I get.
Thank you so much for sharing your story. IBM has primarily affected my legs and was diagnosed in my late 40’s. I lost weight and started exercising regularly and my symptoms stabilized and even improved a bit. The effects of IBM has been episodic for me but have increased lately (I am now in my late 50’s). My mobility is significantly affected. I was able to retire two years ago and am trying to frontload vacations now while I can still get around with walking sticks vs a wheelchair. It reassuring to hear of a normal weight woman with similar struggles, I blame a lot of my symptoms on weight. I’m still working to accept my evolving reality
Strange things were happening to me in my early 50s.2003. I was having trouble swallowing soft foods like pancakes,potatoes,bread.put up with it first then I was getting annoyed and went to the doctor. To make a long story short they dilated the problem in my throat and I was much better for about a year. They had no idea what caused it . They said it’s pretty common when you get older. I had three dialations after the first. Months, years, go by, and I would periodically take a fall here and there and they were traumatic. I hurt myself. I’m thinking, “I’m not paying attention or I’m getting clumsy,but when my knees started collapsing on me, I kind of started thinking something else is going on, what if it’s MS.the whole process was very slow .mind you, I was very active with projects I did ,working with drift wood and jewelry making and working in my little hair salon. I’ve always been strong and fit and I did notice my quads were shrinking(must have been slow too)Got an appointment with a neurologist who didn’t have a clue set me up with a neurosurgeon for a nerve and muscle biopsy. Diagnosed IBM.2014.Up until 2020 my weakness was pretty much in the legs but gradually my arms seem to be getting weaker much faster.unable to apply lotion(can’t get my hands flat.) wash my hair, pick up anything and raise it up above my head, I can still use my hands but getting harder to write
Hi Leslie,
I have exactly the same problems as you . I am in the why me stage and have a lot of fear, how long has your IBM taken to get you to where you are now, as this worries me as my dysphasia has started in my throat, and they seem to be worried about my head as I have had a few falls that caused head injuries, and I do have a brain fog. I also had 2 falls that caused a broken femur, then I did it again and broke the same femur as well as my knee needed replacing, thus I can’t walk properly, as well as the muscle wasting. If you could give me some idea of how long I’ve got?
Many thanks,
Kevin Guest
Hello everyone! I am currently undiagnosed with myositis but after doing a bit of my own research and reading some of these comments on-line, much of all of this makes so much sense. Currently, I have noticed a number of so many of the symptoms you have all shared. (i.e., muscle weakness and pain in a lot of the same areas you’ve described . . . just to name a couple). I think I may have had this or something like it from childhood into my adult life. I’m currently 65 years old with a number of disturbing symptoms that just seem to be worsening. I am so beyond frustrated, as many of you seem to have been or are now. I have had abnormal lab tests, off and on, for years that have usually been dismissed because if I’m fortunate to have them run again, they sometimes come back “normal”. Then, when they do, they’re discontinued. Just to name a few, though: ANA, MGUS, CK. Lately, though, in the past couple of months I’ve experienced severe sciatica pain which I never had before. It’s not really a problem now but it took a good 4 weeks to improve. And, I’ve been struggling with a lot of knee pain that has yet to resolve. Sorry, long string of past and current symptoms that must sound like a total sob story but I feel something is being seriously missed here. If anyone would care to correspond with me and give me some suggestions in trying to convince those in the healthcare profession to take a second look at things, I would be forever grateful. Thanks for listening!
Leslie and Kevin,
Reading your stories is exactly what I have been going through. I was finally diagnosed this past July with Polymyositis. As I go back and think about the symptoms and signs, I have been having them for years. I started having a lot of lower back pain, to the point of not being able to walk or stand, last fall. Doctor sent me to physical therapy, which only made it worse. By June of this year I could barely walk, climb stairs, or stand. Dizziness to the point of falling and eventually passing out. Last passing out I fell and hit my fireplace and had to get 16 stiches in my arm. I was very lucky that it was not my head. Even now after being on steroids, if I fall, I cannot get myself up. I am getting some of my strength back due to the steroids, but what is going to happen when I come off of them? I cannot stay on them forever. They have me on high dose of steroids and other medications as well. I have had my throat dilated 3 times, and I will not have it done again, even with my difficulty swallowing. I am trying so hard to keep a positive attitude, but there are days when I struggle. If someone can give me an idea on what to expect. I know that the only thing I can hope for is to go into remission, but I am not finding many people going into remission. That being said, I have the same question Keving has, how long do I have?
Thanks for any and all information you can provide.
Susan Gardner
I was just diagnosed with CADM. I am 41 years old and freaking out. I had the rashes on my knuckles and scratching for over 3 years thinking it was the soap. Dermatologist never realized what it was and I had been using prescribed creams and wearing cotton gloves in the kitchen thinking it was from chemicals or water in the glove. All started with 2 more rashes on legs a few months ago around May- that looked like tick or flea bites were inside the red circle and itchy 3 months. Did lime test, everything you can imagine and had nothing. Now it is gone with European salt water beach (August vacation) and back to NYC in September. They told me to not cancel my trip over this and we will see what it is when I get back. 30 vials of blood over 3 months later and continued positive ANA and regulated thyroid (I have hashimotos and dose has not changed for 8 years) led them to believe I have CADM. Never heard of it in my life before. Positive Ana twice between July and September 2023 to confirm it was a new auto-immune but doctors could not believe I have a sclerosis even though I have a lot of symptoms. I passed on not having MS (brain scan) and was very scared I had systemic sclerosis as they could not figure it out for 3 months what I have. I had an episode during last week of August humidity temps in NY- felt like 600 pounds and could not move. I was frozen in chair and needed to be pulled out. Next day I was walking slowly like a turtle and crawling up the stairs like a baby. FOr 2 straight weeks I have been fine like nothing happened, so I guess I learned what flare ups are. I never get sick, have not purchased caugh medicine since I was 14 and did not go to Dr. between 14 and 29 years ago when I got pregnant. Even vitamin D is high. I never get sick, Now my whole body hurts for days straight. I noticed when I am stressed about a job site it is worse and I can’t get out of bed. Stress def makes auto immune worse. I am only 41 years old and freaking out because I barely passed the breathing test a few days ago. I have 2 kids and 2 jobs, I keep thinking I am going to die of lung cancer because that is a correlated disease, no one knows why. I can’t leave them in the house debt and family business without me. I keep thinking if I die, my husband will lose the house on 1 salary and the grandmothers will be taking care of them. I keep thinking stupid crazy thoughts. I have been generally tired as a middle class New Yorker as it is, with 6 hours of sleep for the past few years. I wanted to think my body hurt from the lifestyle, but that was partially it. I have to do breathing test every 2 to 3 months. My culture is that women do everything in the house and drive kids around and still work 8 hours minimum and I feel fine moving all day except for random flare up days where I am frozen. Looking back at pictures I was always stiff with my back and left shoulder hurting, I thought it was from being rear-ended since I6 years ago but I am not sure if that is partially it. Why do I have weeks straight where I am fine and then days where I walk like a turtle and need my son to massage my back and shoulder? Why are lungs related to these aches and weird “can’t move” moments? I am slightly overweight for my height at about 29 bmi, but I am not like that heavy to feel that big those bad days. This is crazy and my family culture (immigrant parents) is to be written off or them to make up their own story of why I am how I am. Only 2 people know about this and I can’t tell anyone it is a lung cancer risk. Now I am reading it is also ovarian cancer risk. Nobody knows why. But this is very scary. I will start power walking in the mornings now when everyone is sleeping. I am stuck in the middle class rat race and we cannot afford house keepers and personal assistants so there literally is no time or money to go to trainers right now or pay someone to clean my house so that I can step out and lose work hours on top of it to work out. It just can’t happen. I tried during lunch our only to get ticketed every day for passing 25 mph to run back to the computer. I feel like I am stuck and going to die for no reason. But the good days I think this is all a joke. I don’t know what to do.
Hi to all of you lovely people !
I was diagnosed with
Lupus in ’95, but I was never informed.
It’s affected all of my major organs & I have neuro problems, hemiparis, heart and kidney problems. Right kidney working at 45 %.
I fall a lot, but I don’t realise when I’ve a fracture.
I walked on a fractured heel for a month, 10 days after a fall, a fractured elbow. I htotal gut dysmotility & have haf three ped-j feeding tubes.
Indeterminate Colitis, anaemia, (I’m on B12 shots). Also have frequent falls, & not able to get off the floor. Rheumatoid arthritis, Scleroderma and mixed connective tissue disease, hemiparis, lower limb paresis. Mitochondrial myopathy Lupus. Handdıe tremors & spasms externally and internally, brutal, you have to wait for the spasms to subside, your trapped, oesteopania , lower limb paresis. My oesophagal valve has gone, so I have to be careful, as the food becomes trapped .
The nes diagnosis regarding my Lupus, I just thought it was ordinary Lupus.
It’s not, I have Mitochondrial myopathy Lupus.
If the doctor’s had informed me about my Lupus in ’95, I’d not be in the state I am today.
Due to no treatment for over twenty years, I asked my rheumy about going on a biologic treatment, my rheumy said that I’m too far gone & a biologic treatment with kill me !
I have had muscle biopsies on both of my thighs.
These showed ragged red fibres & blur cox positive fibres, that was over 10 years ago. I’m on double elbow crutches, have frequent hypos as my gastro delay is over 14 hours !
If it’d not been for a bad bout of costocondritis, fives years ago, I was lucky. My doctor checked my bloods & I tested positive for RNP1 & Anti – Smith smooth antibodies. I’m on over 50 tablets a day.
I’m lucky to still drive a automatic car. I have carer’s twice a day.
All of my clothes are pull on. Not able to put my clothes on or off,due to the weakness in my arms and legs. I aslo have muscle wastage, I s this common with this ? I think that if your determined to note cave, ( never been a option from my point of view) !
Positivey is a magor key.
I have to eat cleanly, it lowers your inflammatory levels !
You can check out the foodmap diet, or you can check out the rainbow diet !
I’ve just returned back from being away on holiday.
Aguy, trod on my foot and ankle. The hospital put me in plaster & I now have see the orthapaedics . I’d not wish this upon anyone !
I’m a optimist, so I’ll keep pushing myself, every single day! !
Hi my name is Johnnie am a63 year old female I have had back problems science I was forty and just managing the pain. But around 2014 I started getting knee pain and that pain was the worse so in May of 2017 I had my knee replaced. After I woke up from surgery my leg was killing me. I kept trying to tell them. between all the medication from them and some of my own I went into a delirium and when the new nurse came in she said she could hear me moaning in my delirium so she took off my leg wrap and I was immediately relieaved. So I went through the physical therapy and I started getting better. About 5 weeks after I was getting into a car and didn’t know the glove box was opened and I hit my calf on that and I about went into cavaulsions with pain. I went back to the doctor who did my surgery and that was his last week of practice because Molina my insurance company closed the building where he worked for them. So I was on my own. I was sent to another Orto doctor and he said I needed a revision after an X-ray. I left in a hurry. I had that bruise for two of three months. I got better after some months. Then I started having knee pain in that knee and went to a top Orto doctor and he went through a bunch of tests and thought is was all in my back with a guess. I got shot in my back and all the pain was gone. So I went to work in my flower bed where we had just cut down a huge trumpet vine bush where are the birds lived and slept and not realizing the danger of all the bird poop getting into my lungs. before I had surgery for my knee I went to a pulmonologist to get cleared for surgery and he cleared me but wanted to keep following up. So while my ESI was working I was so happy to not be in pain I went nuts outside because I hadn’t been that pain free in years. I went for a CT scan for my chest and the pulmonologist said it looked like I had chicken disease nodules I told him I don’t have chickens and went on my way. My next visit with my family I asked him about the nodules he said it was just inflammation so I dismissed it. A few weeks later something hit me so hard my arms and hands were covered with bruise spots and my legs swelled up I couldn’t catch my breath and my calf muscle just went nuts I was dilapidated. My family pcp which by then was a PA he thought I had CHF so I had to get checked and it wasn’t that. I started going to every doctor in the world and my leg pain was so bad every where I went no matter what doctor I seen couldn’t find it. They would do X-rays and dopplers on my leg and send me on my way. The trip to the hospital they kept over night for observation and by then you couldn’t even touch my leg without it killing me. they sent me home with a weeks worth of kelflex for cellulitis. When I got out of the car to get home my leg broke. My daughter and husband picked me up after crawling up the stairs. So I ordered mea walker so I could get to the bathroom and get back in forth to bed and recliner. I saw the show chasing the cure and I thought I had some kind of edema so I made an appointment with an and he said he could not help me I needed vascular I told him I have done been there an what does that have to do with my leg bone because by then that was all I thought about so he ordered another X-ray of my leg and it was broke. Something ate my leg in half. So ortho trauma calls me on Labor da and tells me to get there and see about this leg. My leg is screwed it is bent and deformed and it wouldn’t heel. Nobody would give me a dx. I went to my PCP and demanded some antibiotics I told him through my own study I needed long term ones. So he gave me Bactrim and after two years my leg break finally started to heal but there is still something wrong I still have all these random symptoms You can’t touch my leg calf without pain, I can’t swallow right, I still have these purple blotches all over my arms. and on top of that when I was going through all that my daughter was getting married in November and I got up to make some treats for her shower and a jar fell on my foot and I about died. My foot swelled up and I got a on the top of my foot and with what I was going through everything with this leg every time something would hit it I would get hematomas that would burst and put holes in my legs. I would set and clean the litter box I got an infection in one of the holes in my leg and caused an infection so I was hospitalized for five days with antibiotics and then sent home on them. every day for about the next five days the top of my foot started turning black I had a appointment with my PCP and I thought I would show it to her but that day while I was getting ready to see her it busted. I was so grusume I had to back into hospital and made sure they cultured it and it was Pasturella from my cat. So I spent another five days in the hospital and that was finally over. Then Covid hit and once again I was screwed. the only time I fill ok is with a steroid shot in my back. I have had to sign waivers to get this shot because the can’t get it together over at my doctors with pre-auth. Along the long ordeal I have been on is the my lungs got crazy I got real sick and ended up in the hospital for co2 poison. I was very ill. I want my leg fixed and to scared to let the surgeon touch my leg before a DX. When the shots where off I get bone morrow edema and my leg is getting stress fractures that are very painful so I just sign another waiver. I’m sorry for rambling on but I have been going through this since 2018 until now and this is my first attempt at putting it all done.
My daughter was diagnosed with this at age 19. She is now 22. We were hoping that it was maybe the juvenile form and it could be managed, and she could have her life back. However, it does not seem to be responding to even the biggest medications and we have her managed by specialists at Duke University.
Does anyone have any information about the juvenile form? At this age it seems more likely, but again no one knows.
Juvenile myositis (JM) is considered its own form of myositis, even for those in adulthood. Duke Children’s Hospital has one of the best myositis centers of excellence for JM. Dr. Anne Reed runs the center, is a former TMA medical advisor, and is very knowledgeable. She also has a program for transitioning children with myositis from pediatric to adult care. You might ask to consult with her or her team to find the best care for your daughter.
https://www.curejm.org/centers-of-excellence/
Thank you Linda . They did a gigantic blood test to determine subtype, and even sent it off to Johns Hopkins, but it came back “inconclusive”. They have never been able to determine juvenile versus adult, but her age would seem that way she would be more on the juvenile end .. that seemed a little more hopeful anyway. However no one has said either way. I don’t think anyone knows. Any other other ideas and how we could figure it out? It seems that if we knew exactly what it was, that would help treat it.. She was only 19, she is 22 at the time, but this thing is aggressive and relentless. Of course I want to leave no stone unturned, at this very point, things are very rough for her. All input is good input.
I will follow your leads on the lady at Duke. We were just there, and worked with a Dr. Anderson, but no other options were offered. It’s just too far for us to drive. We live in Blacksburg, Virginia, which is about a 3 Hour drive .
I am 70 now was diagnoised in 2016 with Inclusion Body Myositis, Polymyositis, Lupus and Sjogrens. My doctor wants me to try ivig.
Anyone tried and had any positive or negative results?
Just finished reading 31 case studies. I noticed two omissions. First, nobody mentioned the fact that IBM is not symmetrical. Test right leg/arm versus left using a curling exercise or leg extension machine. That fact led me to a neurologist who did the blood tests, 14, and a muscle biopsy. Second, those diagnosed with IBM did not mention exercise. Exercise has allowed me to stabilize my symptoms. Exercise allowed me to continue mountain biking and to lift till diagnosed at 80 yrs.old. Exercise was proven by a Swedish doctor back in the teens. At least get the blood tests, and muscle biopsy, and if positive start exercising your whole body, with weight machines, at your local gym.