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Still don't understand my disease suffering from years... Suddenly i feel my hands & legs are not with me & often a current moves in my legs & arms & often i feel same at my back off & on... It remains in my body for atleast 2 to 3. Minutes & it happens suddenly.... I had consulted many nuro surgeon don't find any pill helpful..after 2 to 3 months I again found my situation same 🥺🥺🥺🥺

Sedrate 116 Titer 1:160 Crp 11.1 Myositis?

I work out I walk and stand o my feet for8 hours a day after work so tired I’m useless to enjoy life

Mine is triggered by ice cream.

I've been trying to get some information out, it seems there is a link between congenital ptosis and dermatomyositis and it could be also for other myopathies. Could the gene responsible for ptosis lead to these conditions ?

I been diagnosed with PM but inclusive biopsy for years because of inclusiveness resulting it’s been 10 years come September i haven’t gain back my mobility and now I got retested for NAM

Thank you for encouraging awareness

Can we use homoeopathic medicine rhus to or arnica Montana for inflation and pain along with allopathy in 6 and half years old just 3 days back with 103 temperature and dr gave augmentin and next day diagnosed mystasis no gave steroid reply plz

Thank you for an honest and insightful discussion. This disease, in it's many manifestations, truly is life changing when diagnosed and is ever evolving. I was diagnosed in 1998 and thankfully had a very astute dermatologist who was able to make the diagnosis quickly. I've "failed" many of the medications but do have a couple that keep me up and moving albeit with many symptoms that I just live with. It's made me live knowing each day is a gift and I try hard not to let it define me as the disease. Bonita, thank you for your story and candidness. You are an inspiration and your help with Myositis and Understanding is truly treasured.

Thank for the video. What is the best treatment Medicine

Excellent video.

Thank you so very much for sharing this information. Bonita has given a great example of what a patient deals with on a daily basis.

Excellent, so appreciated!

gone through PM, fully recovered...No medication since last 4 years. Yes agree the strength and endurance is not as before..but I think with continues exercise I have gained 90% of pre PM.

I was dx almost 2yrs ago now im kinda at standstill bc they dont know what else to do for me.

I’m surprised how is hard for some people to live with this condition. I have Mayositis necrotizing myopathy and it’s scary hard to deal with this condition. But my rheumatologist is so wonderful and smart and she got me on a treatment that is helping a lot and of course God and doing my part . But I will like to know more about it and donor help or be help . My name is Carmen K

I have this same question as someone else in comments. What is a normal time or what is abnormal ?

Does anyone know if calcified granulomas in The lung have anything to do with interstitial lung disease or Myositis? It is something that can happen when disease is not well controlled? Is it totally separate issue?

I definitely can agree with that muscle testing in office. They say I’m not weak yet I Get tested where they take the time in Physical Therapy and can wean down to my weakness which doesn’t always show in the tests in dr office. Plus my home nurse for my infusion has seen just how sick I am more than my dr too. A lot of times drs don’t believe us and say we are not weak when we know how it feels but because they push our arm and knee they decide we are not. That is not right and there has to be a better way or have drs believe patients. I’m not sure but there is a lot to be said and work needed on that. I love the idea of using technology today to make it more patient centered. Sorry brain fog and I can’t access the words of want to say. I have Dermatomyositis. That is one symptom I didn’t hear but I know many of us patients have and it makes it hard to communicate with drs or anyone sometimes. I believe that a lot of it is the fatigue and from that causes brain fatigue, muscle fatigue, all over just full system fatigue. It is so hard like BAnita said to know day to day how we are going to feel and whether I can manage or not. My disease is so complex and a total roller coaster. I can be so good one minute that you wouldn’t know I have anything wrong to the next minute falling over and bed ridden. It can change so quickly. It makes me feel like drs think it is one way or another and when they ask us questions our answers can very for every symptom depending on so much. So it’s hard to explain this. We can say yes I get nauseous when this happens but sometimes i don’t. My symptoms are so crazy and all over the place that I feel crazy saying it. An answer to a question can be yes and no all In one. I agree about drs needing more education for diagnosis. I was sick for 15plus years dr after dr with so many weird symptoms. Because I didn’t have a positive ANA about 10 years ago the Rheumatologist that my family dr try to get me in would not even see me. So I didn’t have to suffer as long if they were more knowledgeable. Dermatomyositis doesn’t have to have a positive ANA. Anyway I’m glad your talking about this because this disease it so complex. My drs still haven’t even talking to each other. I am hopeful that I can one day get a good team. One that also lets me be a part of it. That is Is very important. I’m the one that has to live this life and my opinion matters. After all, I’m being seen to hopefully get what I consider a better quality of life. So right now I’m waiting to be treated and flaring because my bloods all got too low and my Rheumatologist needs a hematologist opinion before she can treat me anymore. I have to wait to see them before we can do anything else. I am off my DM med except for subq IG now. Rheumatologist doesn’t know what to do when immune suppression medicine is causing it to be low or it is something else. DM can actually cause the low counts itself and need more immune suppression to help it. Yet it is lowered or stopped because there is no way to know if it is caused from the immune suppression or the disease itself. I have a lot to say about all this. I believe these systemic diseases need to have a lot of different specialists involved and need specific training in Myositis and the specialty. So we need more drs to train in how Myositis affects each category and full body. I don’t know if that make sense but I tried. Myositis is not just a rheumatologic disease. It can affect every part of the body. I too believe I need checked for gastroparesis. The sad thing is most of the time the doctor where I'm from anyways don't even recognize these problems patients can have and if I didn’t learn my condition and pay attention to my symptoms and advocate for myself and question what could be happening, it seems I would not have any diagnosis and I would have died and believe I was close. It is sad that I went to dr after dr and only when I started really paying close attention and researching myself is when I started finding answers. I see a lot of people that this is not the case and there drs are on it. I think it definitely is different from area to area and dr to dr.

I have severe myositis

I too have Cardiomyopathy with my Polymyositis as well as joint and muscle pain etc. Dr. Aggarwal has helped me from day 1. We tried ablasions on my heart to no avail. I like you have palpitations nonstop. ❤

Is there a blood test for this condition?

Good morning Dr! Thank you so very much sir for your explanation on polymyositis but I want to ask if it's a life threatening disease?

Thank you so much doctor <3

i suffered from fibro. I did the gerson cancer treatment, just half of that therapy diet, after yrs of being so sick with all this......... could not hardly even walk.... and within just 4 months the fibro went in remission and i not had it since! that was in 2006. its jan 2034. whats that say! go natural foods only a few months with HIGH B, C, D, good daily. juice carrots and apples. eat mostly veggies and fruits. learn to walk slow again if you can get a manual good treadmill and use that. i am telling you from one who suffered years, IT WORKS! all those pills they give you do not or you would not still be suffering!

They give us free "high tech" vaccine, but not free basic health care. Now after vaccine, they force you to pay for health insurance that makes you pay for seeing your primary care doctors. these people, so smart. It's better to make selling health insurance or giving free government health care illegal. This way, in order to sell anything these pharma would have to lower their prices, or at least give us the exact value of their service before we opt for it. So Smart.

I'm grateful to have discovered Planet Ayurveda's body aches medicine. It's a testament to the power of natural remedies..

Kindly make available ur contact no.🙏

This video didn't age very well

I am wondering if this is mistaken for fibromyalgia and if people are being misdiagnosed ?

I would love to know the Next exercises to build strength while suffering such bouts terrible fatigue throughout the day. Is it Normal to feel severely fatigued and them somewhat improved t n off n on all day?? I haven't seen anyone for Fibromyalgia since 2001. I don't know of a really Good Neurologist in my Area Unfortunately

Can dry mouth and eyes at night be a symptom of Myositis? Thanks

Thank you Doctor for your wonderful explanations. Do you recommend seeing a neurologist for inclusion body myositis

I have refused medication and treat with natural remedies. Supplements and diet. Any recommendations???

Mine was Ezetimbe

omg maybe my body can not take it

Sir please give solution of myositis

Very informative video 🙏 Thanks

If you have positive polymyositis antibodies do you still need positive ck and emg for diagnosis? My 13yr old daughter has had chronic muscle weakness and in severe cases accompanied difficulty breathing, u able to hold her head up etc. She was positive for anti jo antibodies but is not taking seriously by specialists because her ck levels are normal.

This is exactly what I'm experiencing now. Hopefully physio and meds will work

Hello Dr., my name is Monica GEANG I half myositis and I have fibromyalgia and I have lung disease and I have diabetes and neuropathy. Can you help me? I am in Rochester Minnesota at the mayo clinic here that doesn’t need to help me the thing I am African it doesn’t know how to read and write, they making a fool at me but your video open my eyes. I am in horrible, horrible pain. Sometimes I don’t like my life exist at all. I just have any way out for this life. I will take it was all sad thing about it cause those fans you’re so horrible sometime I would be in pain and I was looking in the kitchen about how to take you to get a good nap and chop my neck out. Can you help me and Mayo Clinic cell doesn’t need to help me I don’t get anybody in Mayo that is the policy that is in business if that doesn’t need to help me I don’t need to be negative about it, God is not dead. God is not blind you see all his not all all the doctor the o the one is been neglecting my care in Mayo. I put them in the game monopoly father God said good night, and I don’t need to get nobody. I have a right to protest or complain. I do my best to get the help I need but now they see me I am them guinea pig I am hopeless I am a macron disability. It’s all weakness in my muscle and pain and also single mother raising up three children with no father I don’t have family here I am alone with my children I know in a bit of my children walking to help me God I wish I have everything, that is OK help me please and write back to me Monica game I’ll leave Rochester Minnesota closest mayo clinic 3 mile

What triggers,is it trauma?

My father had , I have it, my daughter has it.

Hello, I am trying to find information on Myositis unrelated to auto immune diseases. I have found that this can occur but no matter how I search for more information, only Myositis as autoimmune disease comes up. Are you able to direct me to a source on this? I’ve been completely inactive due to fibromyalgia for a few years. I started, very slowly, building up a walking routine to a few blocks most days and within a couple of months had diffuse, bilateral lower leg muscle fatigue/pain that resulted in discontinuation of this activity. I could not go on. So far, there is no relation to my knees or ankles. I go to PT hoping to resolve it. I appreciate any response you can give. Thank you!

I can tell you that my father had polymyositis and years later I'm his daughter developed myositis I didn't know it was rare my father's story is a true miracle .

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Thank you.

triggers are stress , and chemical s and statins ! I also think antibiotics , and ironically steroids too . I also know there is a link between ingesting Alfalfa and the auto immune disease Lupus , which has many similar symptoms as Dermatomyositis. Smoking I would say has a lot to do with the fact that cigarettes have formaldehyde in them ! Formaldehyde makes many people ill , but is still used in building materials , making many homes toxic . I have MCS . I cant live in a home with outgassing of formaldehyde . We need to stop using it in glues , pressed board , carpeting , insulation materials . And there are really many chemicals related to cancers and auto immune disease. I got DM after having my tonsils removed .

Mumps triggered my dermatomyositis. I was vaccinated for mumps as a child.

Hello doc I have diagnosed myositis on my ankle bone , is this serious