My early symptoms of DM were heat intolerance and fatigue. Then I developed rashes in my body with the worst behind my neck. Last symptoms was the muscle weakness. The final symptom was difficulty swallowing and tripping. It took a decade to diagnose.
I suspect I have it but only milder rashes on cheeks with a ragged shape, a bit of redness on chest in a V form and upper arms like a blotchy red band where a blood pressure cuff would be, palm of hands have lightly blotchy red... complete heat intolerance though...
V shaped rash on the chest Rashes on my thighs Rashes on my eyes lids Mechanical hands Muscle weakness Severe pain on my shoulders Back pain.I was diagnosed in 2023 after suffering for 6years.I have 5 different auto immune diseases.It has not been funny at all.
I've been searching for help for months. I've been in and out of doctors, hospitals, I was misdiagnosed as helitrope rash as orbital dermatitis ( it did not look at all like that) I have also been mis diagnosed as dermatitis on my hands tried a medication called "protopic" still no luck. So many tests they realized after 10 grueling months of endocrinology that even including having a PET SCAN yet still sick with no answers. No cancers, I had intestional parasites then cleared them and bam I stayed sick now I have every single symptom on this list including trouble swallowing I don't see a dermatologist until the 26th. Pray for me everyday I feel like I am running out of time. 😢
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I hope you are doing better. I’m trying to help a close friend figure out what’s going on with her. From what I’ve read this disease affects women more often and typically presents between the ages of 50-70.
Thank you so much, I wish I were. My myositis panel came back negative. I am pregnant now diagnosed with a pulmonary embolism yay me *note the sarcasm. They have me on two injections a day at home until the baby is born. The dermatologist diagnosed me with erythromelalgia, the Endocrinologist diagnosed me Raynaud’s! So still kind of wondering what is really going on. Today is my special day I finally have a Rheumatologist after waiting all this time. I am praying for some real answers it seems to never end. I will let you know what goes on today! I hope you're friend finds some answers too I know it's not easy.
@@jessicaholloway646 congratulations on your pregnancy and I hope your appointment goes well. I have raymauds it’s more of a nuisance than anything. Spring is near so I’ll have some relief from it soon. I’ll keep you in my prayers and please let me/us know what happens, it may help others figure out what’s going on with them as well
Doctors are idiots. Get a full blood panel and benchmark (research) organ function and vitamin and electrolyte levels. Take supplements to match, you will feel best when numbers are at average levels. You need to treat symptoms individually, avoid harsh drugs, they don’t work and have serious side effects.
This is very helpful. I’m wondering, I’m currently waiting to be assessed for fibromyalgia by a rheumatologist, my mother was diagnosed with polymyositis 40+ years ago and she had numerous rashes all over her body. She suffered extreme muscle fatigue and became unable to walk and intense muscle pain. I have autoimmune disease, psoriatic arthritis, ankylosing spondylitis etc. my query is this condition hereditary. Rheumatoid arthritis, MS and lupus has been ruled out. When I’m flaring my body shuts down. It’s almost as though it ceases to function and I experience tremors/spasms. I’d been prescribed Duloxetine for my neuropathy pain, but it really doesn’t give me huge benefit and I become chronically fatigued. Your thoughts would be appreciated.
Having MCTD w/APS and Polymytosis for years, the one thing that helps the most is getting full panel bloodworks checking vitamin, organ function, and electrolyte levels, then taking supplements to match accordingly. I do this annually with my family doctor. When numbers are in the average range I feel best. Immune disorders rob the body of certain vitamins, each person is different. For me, my potassium is chronically low so I must take prescription potassium, when it is low, I get reflux and fatigue. I now take Zinc everyday so I found I’m healing faster when sick or if I get a scratch. My Bs are in average range, and yet my husband is always low, so he takes those supplements. I stopped drinking all alcohol and taking Tylenol because my liver enzymes were high, then next time I had bloodworks, my liver enzyme levels had improved. It’s a balancing act.
My Rheumatologist sent me to a Dermatologist because the face rash I have. The Rheumatologist mentioned that he didn't think the rash I have on my face was from my Lupus. The Dermatologist took a biopsy on my face, now I'm going to be asking if I have this. Washing my hair is very difficult and I'm weak and fatigue.
I have Dermathrisis - gottron's papule and I DO NOT feel any muscle weeknesses. I got gottron's papule when I was 18, i'm now 29. It started with painful lumps and sore, swollen fingers, then the pain went to my knees, toes, elbows, shoulders and then my hips. The pain was the worse when I was standing for a long time e.g working, but after I quit working I felt 99 % better since I didn't have to stand for so many hours. I live in Norway and so when it's cold the pain gets worse. I have been in and out of the doctors and specialists for many years, but after they took a biopsi they found out I had Dermathrisis
I just tested pos on ANA and high on RNP only. I keep reading this means one thing: MCTD. I do have many symptoms-most of them mild- but my "come and go" breathing problems which require Breo are a concern, because of the worry of MCTD damaging lungs. Currently jumping through the hoops to get a "a new patient appoint longer than 15 mins. with a rheumy. Phew! The breakdown on tests for Dx o the video was especially helpful.
MCTD is a basket. It means you have two or more immune diseases at once. It took years to find out I had MCTD w/APS and Polymytosis, a rare combination. To treat my breathing conditions I keep a rescue inhaler handy, and Children’s liquid Benadryl. Most of my breathing problems come from random allergic reactions to things.
After years of incurious doctors, including 5 Rhumies, it came out that I have MCTD, APS, with Polymytosis. Plus I get red spots on my feet and hands that are creeping upwards, they burn. I’ve had this for years undiagnosed. My family doctor has no clue on how to treat the condition because there’s little to no medical papers on it. It’s an extremely rare combination. But he is a Prince, and lets me try different things I read about. Steroids caused allergic reactions and so did methotrexate and hydroxychloroquine sulfate. I now take a cocktail of non-sulfa meds to tackle symptoms, Children’s Benadryl to treat all the weird allergic reactions I get, and vitamin supplements, getting blood work benchmarks annually to keeps all numbers average. Or close enough. I can swallow better after having esophagus ballooned, it needs done about every two years.
I'm really sorry to hear about your struggles with such a rare condition. It sounds incredibly challenging, but it's great that you have a family doctor who is willing to explore different treatment options with you. Stay strong and keep advocating for your health!
Hi, I'm a 48 mother of 3, ages 8, 16 and 24. I have all you described but all denied by rhuma. till now skin hives with benadryl and syrtec for almost 9 weeks after 3 or more positive myositis with my rhuma in Upland ca dismissing. Last night I got the labs of now confirming myositis progression to dermatomyositis that my rhuma piggy backed from er labs. Meanwhile I'm with no treatment just left for continued progression while I wait for muscle and skin biopsy till end of June. Please help. Hives in chest legs arms neck scalp face, muscle joint pain in knees right elbow hip are bad as long as I get out of bed. I tell rhuma amd primary neither ate helping they are both in Upland CA. I'm in Fontana ca
Dermatomyositis is a rare autoimmune disease that affects the muscles and skin, and treatment typically involves a combination of medications, physical therapy, and other supportive measures. The specific medication(s) prescribed for your mother will depend on several factors, including the severity of her symptoms, her overall health, and any other underlying medical conditions she may have.
@@mutahirhussainshah Yes!! Dietary changes. I reversed my disease in 6 months (no longer on meds). Check out my video on my channel about living with dermatomyositis
@@rheumatologistoncall hey good evening my husband recently diagnose scleroderma system sclerosis over lapping with myositis and dermmata myositis in Feb 2024
Hi I need help with this disease I believe all my maternal side of my family all suffered and passed away from the disease I'm showing signs bad I also believe I had juvenile dermatomyositis from age 5-15 now having symptoms again but more aggressive I have mechanic hands other lessons on hands arms face starting the shaw and v muscle weakness in my shoulders arms shaky the pulse thing on your finger makes my finger bounce guts rumbling diarrhea no appetite heart and lungs issues other words I need to be officially diagnosed with this disease and start trying to enjoy my life and not suffer with side affects
Good afternoon I'm suffering from DM for 12 years but my muscles are very weak the treatments are medrol and azapress no helping, please be kind Dr I need more information to take care of myself
Can you please tell me why this happens ? What causes it and is it life threatening ? I’m pretty sure this is what I have . I also just discovered a lump on my breast .. and I’m worried I have cancer because I’m so short breath and always have pains and pressure in the middle of my chest . Is there any relation to cancer ? Would cancer cause this ? Please someone help me . I have no doctor right now and I am totally freaking out I’m so scared .
Thanks for keeping it short and to the point! I have some autoantibodies related to myositis.
Glad it was helpful!
Its the most helpful resources. I learn everyday from you. Thank you so much…😉😉
Thank you Dok for enlightening us
We are from the Philipppines
God bless you
You are very welcome!thank you for watching my video and sharing your insight!
My early symptoms of DM were heat intolerance and fatigue. Then I developed rashes in my body with the worst behind my neck. Last symptoms was the muscle weakness. The final symptom was difficulty swallowing and tripping. It took a decade to diagnose.
Thank you for watching my video, dont forget to subscribe to my channel for other videos!
I suspect I have it but only milder rashes on cheeks with a ragged shape, a bit of redness on chest in a V form and upper arms like a blotchy red band where a blood pressure cuff would be, palm of hands have lightly blotchy red... complete heat intolerance though...
@@collegeguy799 It took them ,14 months to diagnose me. Western medicine is not good anymore 😭
V shaped rash on the chest
Rashes on my thighs
Rashes on my eyes lids
Mechanical hands
Muscle weakness
Severe pain on my shoulders
Back pain.I was diagnosed in 2023 after suffering for 6years.I have 5 different auto immune diseases.It has not been funny at all.
thanks dr i m going for exam and ur vid r very helpfull make some on overlap syndr
Will upload soon
I've been searching for help for months. I've been in and out of doctors, hospitals, I was misdiagnosed as helitrope rash as orbital dermatitis ( it did not look at all like that) I have also been mis diagnosed as dermatitis on my hands tried a medication called "protopic" still no luck. So many tests they realized after 10 grueling months of endocrinology that even including having a PET SCAN yet still sick with no answers. No cancers, I had intestional parasites then cleared them and bam I stayed sick now I have every single symptom on this list including trouble swallowing I don't see a dermatologist until the 26th. Pray for me everyday I feel like I am running out of time. 😢
Your support means the world to me! To help more people and get this information spread faster please:
👍 Like and Subscribe
🔔 Turn on Notifications
👥 Invite friends to join
Together, let's keep our community growing strong! 🌱🚀
I hope you are doing better. I’m trying to help a close friend figure out what’s going on with her. From what I’ve read this disease affects women more often and typically presents between the ages of 50-70.
Thank you so much, I wish I were. My myositis panel came back negative. I am pregnant now diagnosed with a pulmonary embolism yay me *note the sarcasm. They have me on two injections a day at home until the baby is born.
The dermatologist diagnosed me with erythromelalgia, the Endocrinologist diagnosed me Raynaud’s! So still kind of wondering what is really going on. Today is my special day I finally have a Rheumatologist after waiting all this time. I am praying for some real answers it seems to never end. I will let you know what goes on today! I hope you're friend finds some answers too I know it's not easy.
@@jessicaholloway646 congratulations on your pregnancy and I hope your appointment goes well. I have raymauds it’s more of a nuisance than anything. Spring is near so I’ll have some relief from it soon. I’ll keep you in my prayers and please let me/us know what happens, it may help others figure out what’s going on with them as well
Doctors are idiots. Get a full blood panel and benchmark (research) organ function and vitamin and electrolyte levels. Take supplements to match, you will feel best when numbers are at average levels. You need to treat symptoms individually, avoid harsh drugs, they don’t work and have serious side effects.
This is very helpful. I’m wondering, I’m currently waiting to be assessed for fibromyalgia by a rheumatologist, my mother was diagnosed with polymyositis 40+ years ago and she had numerous rashes all over her body. She suffered extreme muscle fatigue and became unable to walk and intense muscle pain. I have autoimmune disease, psoriatic arthritis, ankylosing spondylitis etc. my query is this condition hereditary. Rheumatoid arthritis, MS and lupus has been ruled out. When I’m flaring my body shuts down. It’s almost as though it ceases to function and I experience tremors/spasms. I’d been prescribed Duloxetine for my neuropathy pain, but it really doesn’t give me huge benefit and I become chronically fatigued. Your thoughts would be appreciated.
you need a complete reevaluation....
thanks for watching!
Having MCTD w/APS and Polymytosis for years, the one thing that helps the most is getting full panel bloodworks checking vitamin, organ function, and electrolyte levels, then taking supplements to match accordingly. I do this annually with my family doctor. When numbers are in the average range I feel best. Immune disorders rob the body of certain vitamins, each person is different. For me, my potassium is chronically low so I must take prescription potassium, when it is low, I get reflux and fatigue. I now take Zinc everyday so I found I’m healing faster when sick or if I get a scratch. My Bs are in average range, and yet my husband is always low, so he takes those supplements. I stopped drinking all alcohol and taking Tylenol because my liver enzymes were high, then next time I had bloodworks, my liver enzyme levels had improved. It’s a balancing act.
My Rheumatologist sent me to a Dermatologist because the face rash I have. The Rheumatologist mentioned that he didn't think the rash I have on my face was from my Lupus. The Dermatologist took a biopsy on my face, now I'm going to be asking if I have this. Washing my hair is very difficult and I'm weak and fatigue.
It took me 2 years to get diagnosed back in early 2000. It was a dermatologist looking at my rash and diagnosed Mr in 3 sec
I have Dermathrisis - gottron's papule and I DO NOT feel any muscle weeknesses. I got gottron's papule when I was 18, i'm now 29. It started with painful lumps and sore, swollen fingers, then the pain went to my knees, toes, elbows, shoulders and then my hips. The pain was the worse when I was standing for a long time e.g working, but after I quit working I felt 99 % better since I didn't have to stand for so many hours. I live in Norway and so when it's cold the pain gets worse. I have been in and out of the doctors and specialists for many years, but after they took a biopsi they found out I had Dermathrisis
Thank you for watching my videos!
Had it since 14 and added about 10 more diseases since then.. 40 now
I just tested pos on ANA and high on RNP only. I keep reading this means one thing: MCTD. I do have many symptoms-most of them mild- but my "come and go" breathing problems which require Breo are a concern, because of the worry of MCTD damaging lungs. Currently jumping through the hoops to get a "a new patient appoint longer than 15 mins. with a rheumy. Phew! The breakdown on tests for Dx o the video was especially helpful.
It's great that you found the breakdown on tests helpful! Keep advocating for yourself and seeking the right medical care.
My GP thinks I have MCTD but I'm skeptical, I've no RNP, very high ANA and CRP, loads of symptoms though.
@@EmberFfin What are your symptoms? thanks
MCTD is a basket. It means you have two or more immune diseases at once. It took years to find out I had MCTD w/APS and Polymytosis, a rare combination. To treat my breathing conditions I keep a rescue inhaler handy, and Children’s liquid Benadryl. Most of my breathing problems come from random allergic reactions to things.
@@blondek767 I have MCTD are well+SLE,mine was +++. Keep fighting.
After years of incurious doctors, including 5 Rhumies, it came out that I have MCTD, APS, with Polymytosis. Plus I get red spots on my feet and hands that are creeping upwards, they burn. I’ve had this for years undiagnosed. My family doctor has no clue on how to treat the condition because there’s little to no medical papers on it. It’s an extremely rare combination. But he is a Prince, and lets me try different things I read about. Steroids caused allergic reactions and so did methotrexate and hydroxychloroquine sulfate. I now take a cocktail of non-sulfa meds to tackle symptoms, Children’s Benadryl to treat all the weird allergic reactions I get, and vitamin supplements, getting blood work benchmarks annually to keeps all numbers average. Or close enough. I can swallow better after having esophagus ballooned, it needs done about every two years.
I'm really sorry to hear about your struggles with such a rare condition. It sounds incredibly challenging, but it's great that you have a family doctor who is willing to explore different treatment options with you. Stay strong and keep advocating for your health!
Also Galectin-9 is high in blood results when the disease is active
That's an interesting observation, thank you for sharing!
thanks dr do some on sle mctd etc
Will do soon
@@rheumatologistoncall thanks dr very helpfull and best vid i have seen thanks for rspnd
Hi, I'm a 48 mother of 3, ages 8, 16 and 24. I have all you described but all denied by rhuma. till now skin hives with benadryl and syrtec for almost 9 weeks after 3 or more positive myositis with my rhuma in Upland ca dismissing. Last night I got the labs of now confirming myositis progression to dermatomyositis that my rhuma piggy backed from er labs. Meanwhile I'm with no treatment just left for continued progression while I wait for muscle and skin biopsy till end of June. Please help. Hives in chest legs arms neck scalp face, muscle joint pain in knees right elbow hip are bad as long as I get out of bed. I tell rhuma amd primary neither ate helping they are both in Upland CA. I'm in Fontana ca
Very nice and informative vlog 🌹
So nice of you
What's the medicine , my mother is a dermatomyosistis patient
Dermatomyositis is a rare autoimmune disease that affects the muscles and skin, and treatment typically involves a combination of medications, physical therapy, and other supportive measures. The specific medication(s) prescribed for your mother will depend on several factors, including the severity of her symptoms, her overall health, and any other underlying medical conditions she may have.
Steroids (prednisone) initially but mostly diet. Check out my video on my channel about living with dermatomyositis
Have any cure dermatomyositis desease
Cure, no! Treatment yes
@@rheumatologistoncall i done all treatments plan but now i am on wheelchair since 2017
Doctor advice me ivig itsss toooo much
@@mutahirhussainshah Yes!! Dietary changes. I reversed my disease in 6 months (no longer on meds). Check out my video on my channel about living with dermatomyositis
@@rheumatologistoncall hey good evening my husband recently diagnose scleroderma system sclerosis over lapping with myositis and dermmata myositis in Feb 2024
Hi I need help with this disease I believe all my maternal side of my family all suffered and passed away from the disease I'm showing signs bad I also believe I had juvenile dermatomyositis from age 5-15 now having symptoms again but more aggressive I have mechanic hands other lessons on hands arms face starting the shaw and v muscle weakness in my shoulders arms shaky the pulse thing on your finger makes my finger bounce guts rumbling diarrhea no appetite heart and lungs issues other words I need to be officially diagnosed with this disease and start trying to enjoy my life and not suffer with side affects
I'm sorry to hear about your struggles. It's important to seek medical advice for a proper diagnosis and treatment plan.
Vry informative
Thank you
Excellent
Thanks!
If you have dermatomyositis u r free to contact me sisters and brothers
Thank you for watching my videos!
I have it
Good afternoon I'm suffering from DM for 12 years but my muscles are very weak the treatments are medrol and azapress no helping, please be kind Dr I need more information to take care of myself
Can you please tell me why this happens ? What causes it and is it life threatening ? I’m pretty sure this is what I have .
I also just discovered a lump on my breast .. and I’m worried I have cancer because I’m so short breath and always have pains and pressure in the middle of my chest .
Is there any relation to cancer ? Would cancer cause this ?
Please someone help me . I have no doctor right now and I am totally freaking out I’m so scared .