A friend of my mom has this disease. She had difficulty getting diagnosed, and had severe acid reflux and interstitial lung disease, which caused pulmonary hypertension. She just had a lung transplant, and is being tube fed because of the acid reflux. Please pray for her!!
I'm 22, I've had it since I was 11. It has only marginally gotten better. I can walk now but pain is constant. I walk crooked, my spine is damaged, I have atrophied muscles in my back/neck/legs/arms/and hands, I take risky medication (cancer causing). I grew up in the hospital, was clinically dead for 47 seconds, coma 11 hours. I've ridden in ambulances and helicopters. I can give myself an IV to help the nurses with my small veins, I relapse every fall. I pray for everyone out there with this.
update: My husband is now cancer free. As a result, the dermatomyositis is also gone. He is off all medications for the DM, including prednisone. I can only stress again, please talk with your doctor and make sure you are ruled out for any type of malignancy. When the malignancy is gone, the DM is gone.
I'm wondering why you don't mention that often times this secondary to something else. Namely, cancer. If you have this, please make sure that you are scanned to rule out malignancy. My husband has this, we read about it, and insisted on a cat scan and found enlarged lymph nodes. He has been diagnosed with esophageal/stomach cancer. The DM is secondary to this cancer. Talk with your doctor and make sure cancer markers have been done and demand a ct just to rule it out.
my was just diagnosed after way to long with her doctor misdiagnosing her. I kept asking her what her doctor said about her rash etc, he told her it was eczema or something like that... pissed me off. She had severe rash eventually covering her entire body, couldn't raise her arms, could barely walk... i had to call 911 for her. She's back home now, and i don't know if that was wise to send her home after under 2 weeks, steroid treatments etc... it breaks my heart to see her like this.
well....my mom was diagnosed with that and my granpa passed away because of that too but it was poliomyositis but he had a tumor with malignance and disphagia so he died in 2 mos w the sickness......this dr don't care about that then i found a video of a dr saying that adult stem cell therapy helps....i'm not sure buti'll let my mom know!!! gd luck!
I'm sure there are cases where people are 'easily treated', but she makes this disease sound like an irritating flu. My dad has it and it's taken away his job, his ability to cook, and even going grocery shopping lands him in bed for three days. It's a horrible disease and the treatments aren't as 'simple' as she says. They've had to do trial and error with him, and some treatments have been extreme and painful. This was frustrating.
I have had it since I was 5, in high school on homebound. Thought I had it beat at the end of the 7th grade, but it basically destroyed my life as far as I can remember. If only it were as easy as this video suggests....
I'm sorry for your loss, for your suffering and your father's. I hate smug, clueless "professionals" like this one. I deal with them almost as if it were my full time job. I hate the sing-song, condescension in her voice, like she's explaining it to a second-grader. The fact that I'm looking for help and information on YouTube is also part of the problem.
A friend of my mom has this disease. She had difficulty getting diagnosed, and had severe acid reflux and interstitial lung disease, which caused pulmonary hypertension. She just had a lung transplant, and is being tube fed because of the acid reflux. Please pray for her!!
EarthMama77 1 month ago
This condition can be induced by statin drug use
Gunnarsguns 1 month ago
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I'm 22, I've had it since I was 11. It has only marginally gotten better. I can walk now but pain is constant. I walk crooked, my spine is damaged, I have atrophied muscles in my back/neck/legs/arms/and hands, I take risky medication (cancer causing). I grew up in the hospital, was clinically dead for 47 seconds, coma 11 hours. I've ridden in ambulances and helicopters. I can give myself an IV to help the nurses with my small veins, I relapse every fall. I pray for everyone out there with this.
WorldOfKaroo 2 months ago
update: My husband is now cancer free. As a result, the dermatomyositis is also gone. He is off all medications for the DM, including prednisone. I can only stress again, please talk with your doctor and make sure you are ruled out for any type of malignancy. When the malignancy is gone, the DM is gone.
dewieee123 5 months ago
I'm wondering why you don't mention that often times this secondary to something else. Namely, cancer. If you have this, please make sure that you are scanned to rule out malignancy. My husband has this, we read about it, and insisted on a cat scan and found enlarged lymph nodes. He has been diagnosed with esophageal/stomach cancer. The DM is secondary to this cancer. Talk with your doctor and make sure cancer markers have been done and demand a ct just to rule it out.
dewieee123 11 months ago 3
my was just diagnosed after way to long with her doctor misdiagnosing her. I kept asking her what her doctor said about her rash etc, he told her it was eczema or something like that... pissed me off. She had severe rash eventually covering her entire body, couldn't raise her arms, could barely walk... i had to call 911 for her. She's back home now, and i don't know if that was wise to send her home after under 2 weeks, steroid treatments etc... it breaks my heart to see her like this.
RaymondFRevalee 1 year ago
I HAVE THIS DISEASE AM 16 NOW IT IS NOT ACTIVE RIGHT NOW
408mona 1 year ago
well....my mom was diagnosed with that and my granpa passed away because of that too but it was poliomyositis but he had a tumor with malignance and disphagia so he died in 2 mos w the sickness......this dr don't care about that then i found a video of a dr saying that adult stem cell therapy helps....i'm not sure buti'll let my mom know!!! gd luck!
rlupita82 1 year ago
i got it when i was ten, such a rare illness- i'm lucky to be alive, there is hope, i promise x
NorwichGanjaGirlz 2 years ago
I'm sure there are cases where people are 'easily treated', but she makes this disease sound like an irritating flu. My dad has it and it's taken away his job, his ability to cook, and even going grocery shopping lands him in bed for three days. It's a horrible disease and the treatments aren't as 'simple' as she says. They've had to do trial and error with him, and some treatments have been extreme and painful. This was frustrating.
joeyjohnson992 2 years ago
I have had it since I was 5, in high school on homebound. Thought I had it beat at the end of the 7th grade, but it basically destroyed my life as far as I can remember. If only it were as easy as this video suggests....
Sciencelover5 2 years ago
More videos like this (only for physicians) at symposier (.com)
drzugo 2 years ago
its not easily treated!!! it is deadly!!!!!!!! i hate these dumb doc's they all suck i lost my poor loving dad!!!!!!!!!!!!!
allyandty05 2 years ago 3
I'm sorry for your loss, for your suffering and your father's. I hate smug, clueless "professionals" like this one. I deal with them almost as if it were my full time job. I hate the sing-song, condescension in her voice, like she's explaining it to a second-grader. The fact that I'm looking for help and information on YouTube is also part of the problem.
mediavore9 2 years ago
@allyandty05 Almost killed my mom caught it just in time.
mengle2004 8 months ago
I was diagnosed in 1991. I wish it was a two year disease that didn't come back. CureJM has been a good resource.
Sadydawn 3 years ago
I supposedly had the childhood version at 13; it really never went away, only regressed. I still have flares now and then.
KECOG 3 years ago
Does this disease or it's treatments cause any side effects later on in the life of the patient, any skin problems.(i used to have it)
tcrusader 3 years ago
I haven't heard this before, a 2 year dm run, and then it goes away??? hmm
arimayasg 3 years ago
If only I were one of those "easily treatable", non-recurring cases =(
survivedall 3 years ago