The Reality Of Myositis: What You Need To Know

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Hi Guys!
If I told you I've had progressively worsening muscle weakness, possibly some muscle wasting, and a reddish, purple rash on my face, neck, shoulders etc what would you diagnose me with?
In this video, we're going to talk about The Reality Of Myositis: What You Need To Know. Myositis is an autoimmune disease that causes inflammation in the muscle and can be very serious.
We're going to discuss the symptoms of myositis, the different types of myositis, and what treatment options are available. We want to make sure you're fully aware of the reality of myositis, so that you can make the best decision for your health. Myositis is a serious condition that can affect different parts of the body, and it can be very disabling. In this video, I'm sharing with you all the information you need to know about myositis and the reality of the condition. I hope that by learning about myositis, you'll be able to better understand and cope with the condition.

As always stay healthy and lucid 💡
Danielle

Let's Connect!
00:00 Introduction
01:12 What is Myositis
02:54 Dermatomyositis
03:57 Polymyositis
04:41 Inflammatory Myositis
07:56 Juvenile Myositis
09:08 Myositis Triggers
13:51 Testing for Myositis
17:09 IVIG/Treatments
19:46 Doctors who treat Myositis

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Please watch: "DYSAUTONOMIA/POTS: A Frightening Reality"
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[mariadelloglio]

Please don’t take steroids please try to find natural drugs because I lost my husband from all the medications he was on and I wish I can turn back time and had him never take steroids. My husband blew up like a balloon. and at 50 years old had a cardiac arrest. Please do more studies work out as much as you can strength your muscles and if you need to smoke weed whatever it takes. Also try the oxygen therapy Please do your research. I am no doctor but I saw what it did to my husband. Like I said please do your research and please get different opinions.

[Allium_]

Been undiagnosed for 3 years now and my father is going on 13 years. This looks like another avenue to go down. Thank you for the information.

[Anonomyous-ts]

Thank you so much, very informative! Searching for help for a friend who survived non-Hodgins lymphoma chemo & now has dermatomyosis. 85 yrs old

[lulumoon]

This was VERY timely and thorough. Thank you for your work and your great comment section.

[annaruiz]

Finally!!! My rheumatologist have not been able to figure out what disease I have but you just helped me!!! Unfortunately IBM is my self diagnosis but now I have info I can take back to my doctors!

[arthurdanielles]

Good to see this as a topic. HOWEVER, no one should be under any illusion OR delusions re these variations on the diseases highlighted. There can be a multitude of good, bad and indifferent issues going on and some will have them, some won't and that's a known FACT. NEW studies are showing up some formerly unknown variations, no surprises there as this overall is not fully understood enough to be absolute re diagnosis, treatments etc. What is good to see is the recognition that this IS a VERY complex disability. Make no mistake about that it can be cruel in how it targets not just the muscles but the motor neurone AND cardio vascular systems. CK (Creatine Kinase) levels can be a sure fire indicator when they are RAISED to levels which are seriously not good. HIGH or SERIOUSLY HIGH levels to the extreme can cause major damage to the muscles but also BODY MASS in general.

[claudiarivera]

Thank you for a wonderful presentation. I'm 43 years old. Im living with Dermatomyositis for 42 yrs now. And nope. That's not a typo. God Bless Dr. Fink!! And you NAILED this video!!!

[nurseemmiejae]

Wow. Thank you for sharing! This is what I have been looking for. I needed something to confirm what I have been going through. Misery. Being in the dark, I was 50 y/o when I found out what I had from 50, now 54 years old ... I like the way you talk. Compassionate but Real! Thank you So much. 😢😮😊😊😊❤

[kratos]

Just spent 4 days in the hospital on the first of the year and just got diagnosed with myositis.. im 35 an i help my disabled father (truck accident) this just makes me feel helpless...

[MrHerks]

Super helpful, thank you. Being checked for myositis right now. Over the past year (since 2 covid infections and the vax) my muscles have been weakening and cramping horribly. Trouble breathing, fatigue but can’t sleep cause I keep having muscle cramps, I haven’t been able to relax in probably 9 months. RF factor is high and Creatine Kinase is 300+ points above normal. Kidneys also showing signs of weakness. From hiking 50 miles on weekends to barely being able to complete a shower has been rough. Still more testing this week to hopefully finally get some form of treatment. Not sure I’ll be able to go much longer longer this

[hilarycolefromzimbabwe]

I have been just been diagnosed with Myositis today unfortunately, by a Allergist physician specialist/professor and I am just read and trying to learn up slowly about this disease.
I live in Harare Zimbabwe in Southern Africa and my name is Hilary Cole. I will be turning 59 in July. I am happily married with one adult daughter whose 28 and she is engaged with an one year old son.

[dontuckerjr]

Thanks for the info. I came to your videos because of IvIg interest. So I have myositis and will (finally) be scheduled for IvIg. I feel like this may be my only hope for disease remission. My myositis came on full force about three weeks after a Covid booster in November 2021. I don't know if I can blame the Covid booster entirely because I got the Shingles vaccine also in late 2021. I recently noticed the Shingrix commercial warning of Guillain-Barre associated with the Shingles vaccine. So I'm not doing vaccines any longer maybe never again. I'm fortunate to live in Florida where I may have a tiny bit more protection. Anyway, I am staying hopeful. I was fortunate to have access to a physician not afraid to prescribe methotrexate. It has kept my CK level in the mid 400s. I take 10mg twice a week for a weekly total of 20mg. I would prefer not to be on any medication, though. Perhaps IvIg will make a difference for me.

[ehinspections]

Thank you for sharing this great in formative video!!

[mariamedina]

I’m just diagnosed with IBM yesterday. 😢 thank for your presentation I need know about IBM more

[Srijasrinivasnadipineni]

Thank you for the video. Can we get genetic myositis ?? If yes, is there any treatment for genetic myositis?

[nessabeane]

Been having alot of issues with my body since i was a teen, a lot of falling, malar rash, tingling, weakness and never said anything or even tried to go to the doctors..first time going to a hospital in a long time recently due to faling in my shower and losing the ability to walk unassisted, found out that i have Lupus and Myositis.... all within 1 month..

[TiashaAlexander]

Very information can I tell my PC bout treatments that is available

[SherriLyles]

I was just diagnosed with this and am 43 years old. Not sure which type I have but Im also seeing a pulmonologist. I dont feel like my spouse is super supportive but he is always stoic. He did get me a gym membership so I can try to do what I can to take care of myself beyond doctors and meds, I suppose that's gis way to show he cares, but otherwise he never wants to hear about it 🙄. If I bring it up, he sees any medical complaint as complaining. So I feel alone in this and stress doesn't help either.

I am on a immunosuppressant at the moment that doesn't affect my lungs. Starts with an Az... Something. Cant remember exactly what it's called. But I just always thought all these things were normal and I started having tepuble picking up my feet walking and studden weird weakness out of nowhere. But the biggest thing was arthritis or aches in some of my joints but it would go away. So I thought I was going crazy. I'm still on a journey to figuring out things, but this video was very helpful. Thank you. 💙. FYI May is Myositis Awareness Month. I am going to see if there are any events in my state. (Sorry for typos, on mobile, and to weak too care 😂).

[Darlene-jq]

BEFORE meditations or anything else, I may have experience in my adult life. I was already having signs and Symptoms of Dermatomyositis, Sjogrens and Polymyositis. I had trouble keeping my head lifted, couldn't jump. No balance, no coordination. Dry mouth with white membranes i would pull out of my mouth, root of my mouth will swell for NO reason and gums will swell as a child ( even now all right as having flare up), Tongue sores, tongue in pain certain foods bring on waps on tongue and tongue will split ( and it still does today). Also having Daily headaches and migraine from the age of 14 to this very day. My head is hurting even now it never stops. Shoulder, neck and back pains since around the age of 16 . At the age of 15 sensitivity to fumes, cleaning products, perfumes etc.

I had been undiagnosed and misdiagnosed my whole entire life as a child, Juvenile Myositis.

I have been going through it all since a child up to this date. In 2021 Iwas diagnosed with dysphasia, dysphonia, oropharyngeal. I finally been diagnosed with In 2012 I couldn't lift up a 1lb weight. I was diagnosed having Dermatomyositis in 2022 by way of left Deltoid biopsy, also Dermatologist skin biopsy. I had and have rash circles within circles in my scalp with dark purple blotches and hair thins where the rash comes painful. Also I have the discoloration around finger tips, red strawberry rash on my chest. In 2013 I had a shock wave treatment on right foot Dr put me to sleep and pain meds via IV as he proceed. Then within a week my mucles got weak and i couldn't walk at all muscles in excrutiating pain thighs, legs then the flare hospitalized me then I was diagnosed verbally with Polymyositis in 2013 by a doctor, cpk went from 20, 000 to 200, 000 and medically diagnosed in Sjogren in 2023 by a oral specialist, and also Intracranial hypertension in 2023. Vaccine brought on my Myositis, also Statin medication triggered it as well in 2021 my very 1st use i was taking it about 3-4 days and I got weak in my extremitiesand couldn'tlift my leg'sto get in a car, hard time getting up from seating to stand, walking up stairs, and muscles in Excruciating pain. My thighs and legs muscles hurt daily and i am always fatigue to exhausted daily. Catching colds, being around anyone with a cold and me having flu also brings on and has triggered Myositis in 2021-2022 wiping running noses from children brings it on and I always was hospitalized. There are other times it flares up without anything in October 8, 2024- October 21st I was hospitalized with big flare up cpk was 100 then it jumped to 140 ( i was in Excruciating muscles pain barely walking slow as a snail) then it went to 15, 000 at this point I couldn't even been to sit on the toilet pure agony and I couldn't bend to put clothes on or anything off the floor. My thighs and legs and arms were weak and hurting.

Also, 61 years ago I was born weighing 2lbs 2 1/2 oz. I found out in 2022 that my mother had me at 25 weeks 61 years ago( brain was developed, but not alot of systems and body) My mom starting bleeding while out shopping and was in a car wreck on the way to the hospital. They lost my mom twice and God brought her back as doctors worked on her. I was told the doctors fought really hard to KEEP me alive. I am told by doctors I am a living miracle. Also a MRI taken in 2024 for low back also showed I had Myositis!! During this time I was in a big flare and could barely walk, walking slowly with walker and I let the doctor and P.T. know that I was having flare up.

I now get Treatments but still experiencing muscle weaknesses and exhausting and fatigueness daily and daily headaches and migraines. I NEVER know how I am going to feel physically or mentally from 1 minute to the next.

[VanessaGarcia-]

I have dermatomyositis been on ivig for 8 months autoantibody TIFF1 GAMMA negative cancer panels always in pain I take highest dose of cellcept diagnosed when I was 27 I'm 28 now I can't even brush my hair anymore I can't do anything really I hate it I lost my life my work cut my hours from 40 plus to only 16 I can't even survive