Jesus christ, imagine having this AND a disease like lyme or HIV or something that requires a bolstering of the immune system. You'd be FUCKED! Suppress your immune system, bolster the infection, bolster the immune system, and it attacks you. The people who have this need to be very damn careful of exposure to viral and bacterial infestations. My heart goes out to them.
Hello, I received my "Muscle Biopsy" test results today. :-( And I also have been diagnosed with"Polymyositis". I am numb with the shock impact it has now brought into what was once my healthy life that is no more. :-( Before my diagnosis, my Doctor has had me on perscription Ibuprofen 800mg & Oxycodone 7.5-325mg. Now with todays devastating news, he wants to start me on "Steroids" for the next 28 weeks. "I sure would appreciate some moral support from someone that knows about this". 5/13/11
i was diagonsed when i was in 5th grade, i am now a freshamn in college, i was treated for four years and am now healthy, but god, it was the worst years of my life, children or anybody for that matter shout get it, prednisone is a bitch. And theres always the chance it could come back... =(
@Squeakypink That is great,, I hope you stay healthy. I have had it for 2 years and have had a great deal of improvement, but i would love to just have it go away and not have to worry. I know as a child it must of been really hard for you so i wish you the best...
I have this condition also but nothing they gave me has been working. I also been been diagnosed two years ago. I have taken ruxtuin and it has not worked.
@35nytigers Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
OMG i have a autoimmune disease like this it is dermatomyositis though. which is the same thing but instead of attacking my lungs and organs it attaks my muscles and my skin causing inflamation!! i was 12 when i was diagnosed and have to take prendisolone and methotrexate
@govesean Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
I have PM too, but luckily no lung problems yet. I realize this a dramatization of a true story. It's took > 3 years for a diagnosis. Part of the problem was that with my medical insurance, it takes 3 months for a new specialist to see me. I was referred to the wrong specialist twice. Another year goes by, and I am still wondering why I can no longer get out of an armchair without hanging on to things to pull me up. I cannot walk reliably.
@Jamie10014 Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
I was recently diagnosed with this disease just last month of this year .... The syntoms started in Febuary 2010, I'm just glad they found out what I had tho I'm still very sad and shocked to know :( but I have faith <3
@EternalSecret17 Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
@EternalSecret17 | Hello, I received my "Muscle Biopsy" test results today. :-( And I also have been diagnosed with"Polymyositis". I am numb with the shock impact it has now brought into what was once my healthy life that is no more. :-( Before my diagnosis, my Doctor has had me on perscription Ibuprofen 800mg & Oxycodone 7.5-325mg. Now with todays devastating news, he wants to start me on "Steroids" for the next 28 weeks. "I sure would appreciate some moral support from someone that knows".
Rheumatologist specialize in Rheumatic conditions including Polymyositis is one of the over 150 diseases that fall under rheumatology. The show says rheumatologist specialize in joints but in reality many autoimmune rheumatic diseases can attack anything. Polymyositis is hard to diagnose until the elevlation in CPK shows but then one has to rule out diseases liek dermatomyositis. the symptoms could have pointed to Lupus as well. Rheumatic diseases are not as simple to diagnose and some think.
I think this show exaggerates a bit. I am not minimizing the disease. But I truly believe that the physicians know a bit what this woman had. Come on, proximal muscle weakness with constitutional symptoms... What else can you think of? Do rheumatologic work-up including anti-Jo1.
@otterboxiphone I don't think so. I think this is a good example of how people struggle to get diagnosed. Many diseases do have similar symptoms. This show isn't just abouy rare diseases, It's more about how people struggle to get diagnosed. When you think about it, it can look a lot like Lupus or Multiple Sclerosis.
My mother died of this disease on March 4th 1988, misdiagnosed and in alot of pain until it was finally diagnosed correctly and then it was too late her organs shut down.
I was diagnosed in 2002 at age 63. After a sit-down job for 34yrs we thought my increasing weakness - difficulty getting out of a chair or climbing stairs - was due to the job. then after retiring and taking exercise walks but falling a lot my family dr sent me to a neurologist. the first blood text showed such high cpk readings he called me and asked if I was currently having a heart attack. Further test and a biopsy confirmed the diagnosis as far as he was concerned.
I was diagnosed with polymyositis in 1991 at the age of 34 with a cpk count of over 19,000! Amazing, I was like looking at my life... minus the pregnancy. I've been on so much medication over the years, including IVIG, and still on quite a few including prednisone, never getting off
in 18 years, so imagine the weight gain!
The most important thing to remember is your sense of humor, "I'm still here living my life sucking up air!" I can walk again (still no driving) and I'm still damn cute!
@darcyn2 Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
How is it that no one up until this point that someone isn't really concerned about the elevated WBC for so long...and how come its a rheumatologist diagnosing this...I mean good on her for doing it but shouldn't it be a hematologist or endocronologist...or even her first pulmonologist?...
generalized(?) muscle weakness without an obvious neurological component should have generated a CPK determination a lot sooner and subsequently homed on to a primary muscle disease. elevated WBC could have been looked at as to whether it was primary or secondary. none of these should take months to sort out.
@irish4eva101 Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
I have the same condition...was diagnosed 2 years ago and today I'm climbing stairs on my own, I go scuba diving too, but can't get up with the tank on my back yet. Ciclosporin, Methotrexate and Prednisolone and a lot of faith and humour are keeping me going!
keep in touch, I live in a very small town and i am the only one with this and i really need someone to share my feeling with..sdenise91@yahoo.com
sdenise1796 1 week ago
Jesus christ, imagine having this AND a disease like lyme or HIV or something that requires a bolstering of the immune system. You'd be FUCKED! Suppress your immune system, bolster the infection, bolster the immune system, and it attacks you. The people who have this need to be very damn careful of exposure to viral and bacterial infestations. My heart goes out to them.
xilix 3 weeks ago
OMFG MY GRANDMA HAD THIS DX i didnt know she never told me
KalissaFluffy1 1 month ago
Hello, I received my "Muscle Biopsy" test results today. :-( And I also have been diagnosed with"Polymyositis". I am numb with the shock impact it has now brought into what was once my healthy life that is no more. :-( Before my diagnosis, my Doctor has had me on perscription Ibuprofen 800mg & Oxycodone 7.5-325mg. Now with todays devastating news, he wants to start me on "Steroids" for the next 28 weeks. "I sure would appreciate some moral support from someone that knows about this". 5/13/11
wdonald8 9 months ago
@wdonald8 I have had the disease for 2 years now, and it is really an eye opener. You just have to take on day at a time.
sdenise1796 1 week ago
@sdenise1796
I'm still within' my first 12months/year.
I sure hope I don't find my body needing surgery for stomach or lungs or any other organs. :-(
I can't face the pain & destruction that this disease does to our bodies.
Chat me sometime on Skype: darrin.schultz
Hope to chat again soon, thanks for your inspiration.
wdonald8 1 week ago
My uncle was diagnosed with polymyosits.
MrBuckmaster69able 10 months ago
i was diagonsed when i was in 5th grade, i am now a freshamn in college, i was treated for four years and am now healthy, but god, it was the worst years of my life, children or anybody for that matter shout get it, prednisone is a bitch. And theres always the chance it could come back... =(
Squeakypink 11 months ago
@Squeakypink That is great,, I hope you stay healthy. I have had it for 2 years and have had a great deal of improvement, but i would love to just have it go away and not have to worry. I know as a child it must of been really hard for you so i wish you the best...
sdenise1796 1 week ago
It's too bad they can't fix it for good. :(
bittykittyxo 1 year ago
I have this condition also but nothing they gave me has been working. I also been been diagnosed two years ago. I have taken ruxtuin and it has not worked.
35nytigers 1 year ago
This has been flagged as spam show
@35nytigers Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
kylextown24 1 year ago
youtube skips 9:43 and go directly to 9:44
Spluttergubben 1 year ago 3
OMG i have a autoimmune disease like this it is dermatomyositis though. which is the same thing but instead of attacking my lungs and organs it attaks my muscles and my skin causing inflamation!! i was 12 when i was diagnosed and have to take prendisolone and methotrexate
govesean 1 year ago
@govesean Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
kylextown24 1 year ago
This show is so unbelievable interesting - I am sooo tired but I can't stop looking this show :D
godessshannon 1 year ago
why the hell is her electromyogram reading normal ???!!!
munam87 1 year ago
@munam87 because it's not a nerve condition, it's an inflammatory autoimmune condition
kylextown24 1 year ago
I can relate to this woman in one thing: I have trouble opening jars, water bottles, etc.
HououMinamino 1 year ago
I have PM too, but luckily no lung problems yet. Can anyone identify the drugs she was prescribed when prednisone failed?
Jamie10014 1 year ago
I have PM too, but luckily no lung problems yet. I realize this a dramatization of a true story. It's took > 3 years for a diagnosis. Part of the problem was that with my medical insurance, it takes 3 months for a new specialist to see me. I was referred to the wrong specialist twice. Another year goes by, and I am still wondering why I can no longer get out of an armchair without hanging on to things to pull me up. I cannot walk reliably.
MDs, please think of this as a poss diagnosis.
Jamie10014 1 year ago
This has been flagged as spam show
@Jamie10014 Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
kylextown24 1 year ago
6:50 FAKE IF SHES WEAK HOW SHE OPEN THAT HAHA GOTCHA ALL
ShShill 1 year ago
Btw I'm only 18 years old
EternalSecret17 1 year ago
I was recently diagnosed with this disease just last month of this year .... The syntoms started in Febuary 2010, I'm just glad they found out what I had tho I'm still very sad and shocked to know :( but I have faith <3
EternalSecret17 1 year ago
This has been flagged as spam show
@EternalSecret17 Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
kylextown24 1 year ago
@EternalSecret17 | Hello, I received my "Muscle Biopsy" test results today. :-( And I also have been diagnosed with"Polymyositis". I am numb with the shock impact it has now brought into what was once my healthy life that is no more. :-( Before my diagnosis, my Doctor has had me on perscription Ibuprofen 800mg & Oxycodone 7.5-325mg. Now with todays devastating news, he wants to start me on "Steroids" for the next 28 weeks. "I sure would appreciate some moral support from someone that knows".
wdonald8 9 months ago
too many specialists and no one to put the symptoms together - it's the same every time with this show
MachineAmbition 1 year ago
Rheumatologist specialize in Rheumatic conditions including Polymyositis is one of the over 150 diseases that fall under rheumatology. The show says rheumatologist specialize in joints but in reality many autoimmune rheumatic diseases can attack anything. Polymyositis is hard to diagnose until the elevlation in CPK shows but then one has to rule out diseases liek dermatomyositis. the symptoms could have pointed to Lupus as well. Rheumatic diseases are not as simple to diagnose and some think.
FlyfreeIzzie 1 year ago
I think this show exaggerates a bit. I am not minimizing the disease. But I truly believe that the physicians know a bit what this woman had. Come on, proximal muscle weakness with constitutional symptoms... What else can you think of? Do rheumatologic work-up including anti-Jo1.
otterboxiphone 1 year ago
@otterboxiphone I don't think so. I think this is a good example of how people struggle to get diagnosed. Many diseases do have similar symptoms. This show isn't just abouy rare diseases, It's more about how people struggle to get diagnosed. When you think about it, it can look a lot like Lupus or Multiple Sclerosis.
montanerfan10 1 year ago
My Mum has Rheumatoid Arthritis which is similar to this. It's hard, but she is making it.
FantasyFanatic911 2 years ago
My mother died of this disease on March 4th 1988, misdiagnosed and in alot of pain until it was finally diagnosed correctly and then it was too late her organs shut down.
belairhotrod 2 years ago 3
I hope she got on disability.
Weisenheimer78 2 years ago
I was diagnosed in 2002 at age 63. After a sit-down job for 34yrs we thought my increasing weakness - difficulty getting out of a chair or climbing stairs - was due to the job. then after retiring and taking exercise walks but falling a lot my family dr sent me to a neurologist. the first blood text showed such high cpk readings he called me and asked if I was currently having a heart attack. Further test and a biopsy confirmed the diagnosis as far as he was concerned.
mother669 2 years ago
I was diagnosed with polymyositis in 1991 at the age of 34 with a cpk count of over 19,000! Amazing, I was like looking at my life... minus the pregnancy. I've been on so much medication over the years, including IVIG, and still on quite a few including prednisone, never getting off
in 18 years, so imagine the weight gain!
The most important thing to remember is your sense of humor, "I'm still here living my life sucking up air!" I can walk again (still no driving) and I'm still damn cute!
darcyn2 2 years ago
This has been flagged as spam show
@darcyn2 Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
kylextown24 1 year ago
How is it that no one up until this point that someone isn't really concerned about the elevated WBC for so long...and how come its a rheumatologist diagnosing this...I mean good on her for doing it but shouldn't it be a hematologist or endocronologist...or even her first pulmonologist?...
beautywithin85 2 years ago 2
My uncle has this, it's been ten years and he's still hanging in there
banconformity432 2 years ago
goerizal, agreed. That is how it was with me. I was diagnosed with PM within a month of my first visit to my primary care physician.
xlguitaristlx 2 years ago
Comment removed
xlguitaristlx 2 years ago
generalized(?) muscle weakness without an obvious neurological component should have generated a CPK determination a lot sooner and subsequently homed on to a primary muscle disease. elevated WBC could have been looked at as to whether it was primary or secondary. none of these should take months to sort out.
goerizal 2 years ago
This has been flagged as spam show
She has big breasts, I love these shows because they tell people can do anything!
ajhaydenus 3 years ago
im so sorry for you
jonaslordi 3 years ago 3
my mum has it
irish4eva101 3 years ago 2
This has been flagged as spam show
@irish4eva101 Everything can be reversed. My wife had polymyositis and my aunty had cancer. Given my knowledge of health and nutrition, I encouraged and educated them about becoming a raw vegan. Our bodies are designed to heal themselves and unfortunately, we don't give our bodies the proper nutrition to do so. Most people stay on the Standard American Diet and develop unfortunate conditions. Anyways, to make a long story short. They both became raw vegan and reversed their conditions!
kylextown24 1 year ago
I love this show
weefyone 3 years ago 28
me to!
poisondartfrog1000 2 years ago 3
You go gurl!!!
I have the same condition...was diagnosed 2 years ago and today I'm climbing stairs on my own, I go scuba diving too, but can't get up with the tank on my back yet. Ciclosporin, Methotrexate and Prednisolone and a lot of faith and humour are keeping me going!
kazzadivenazi 3 years ago 16