The Myositis Association, Patient stories, Polymyositis

Dale Scott-Harrisburg, Pennsylvania, polymyositis.

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💻 Originally aired 2014.

[ConnyC]

Love the fact how she mentioned how people have a hard time with someone looking well outside when you aren't well.

[steffyjustin]

😭 tears are running down my cheeks as I listen to your journey. I had 'mechanic's hand' since 2021. I thought it was an allergy to soil as I had started gardening.

Then I started having joints pain. I thought it was because I had started Strength Training. A physiotherapist also said it's because I was doing it wrong ! Wrong posture according to him.

It was only last month that I was diagnosed with rhumatoid arthritis. Last week, my JO-1 results came and Rheumatologist now says there's an overlap with myosotis. (poly/dermato). I'm scared of the complications. It's a relief to know that you were able to heal your ILD.
I hope you are doing well.
Bless you.

[stephaniewoznicki]

Thank you for sharing your history and what you went through to get to the dx. I have hEDS and am currently being evaluated for Myositis I also have Sjogrens Syndrome. Just being told that there is something else going on that can be treated versus just being told there is no treatment or being turned away because the doctor is not familiar can be so disheartening. Thank you for sharinng your story Dale.

[Daysha]

Thanks so much for sharing your story. I'm now dealing with what is suspected is Polymyositis. I'm "fortunate" in that my PCP listened to me when I saw her for extreme muscle weakness and decided to test me for muscle connectivity diseases. Once she received the results she immediately had me see a rheumatologist who has been pretty good at sending me for additional testing. Thanks again for sharing.

[charleshmansfield]

Miss Dale,
It is heartbreaking to hear your describing your illness without a correct diagnosis for months and months.
I agree that primary physicians should all be trained to recognize one or more symptoms of a myositis condition early.
Now, I’ll tell you and everyone else my story in abbreviated form. I do have polymyositis, dx in my 50s. I noticed one day that my left pinky wasn’t working just right when gripping a lawn care bucket. That weakness persisted for a very few weeks, and then on my next visit to my MD, I mentioned this pinky problem, and he promptly referred me to a local neurologist. After getting the normal regimen of tests (blood, EMG, and soon thereafter a muscle biopsy), I was diagnosed with polymyositis. Like you, I was prescribed Prednisone and Imuran. That was about 20 years ago, and during that time I have lost a considerable amount of muscle mass, but am still ambulatory. I won’t go into other problems with weakness, but there are plenty. What I want to emphasize is the importance of a primary physician’s absolute training to recognize myositis symptoms early. It’s not that difficult, and modern tests can point doctors in the right direction to make a correct diagnosis much sooner.
Now, the ongoing question is, what causes myopathies? I don’t know, but I’ll say this, I never had this problem until I started taking statins for elevated cholesterol. I can’t prove it, but I’ll always believe that was the cause. Best wishes on your journey with polymyositis.

[nisitilmon]

Thank you for sharing! I’m on my journey to be diagnosed, even though with all my symptoms I’ve determined that I have a type is myositis! It’s a debilitating nightmare!

[ShamekaCheek]

I agree with her about how you cannot look at a person and tell what's going on inside? Also, the amount of pain he or she has? Including primary doctors need to listen more to the patients when they complaint. It's not always inside a person head. Great video.

[MegaMusical]

What was the name of the test that finally got you diagnosed? I've seen everybody & took all kinds of test & nothing, so frustrating.

[persuaded]

My primary care physician was thee worst 🥴

[tessmoore]

Why do they insist on putting people on prednisone which is really bad for your liver and kidneys?

[fambam]

I've been diagnosed with Myositis. I continue to have high CK levels it's like every where I go no one knows what I have or how to properly treat me. I've been in the hospital for last 3 months unable to sand from low spaces or comb my hair. Just little things of daliy living are hard for me. I want to get back home to take care of my children. I need help if anyone can help please respond to me. Thank you!

[Rubi_]

Is the immuring an infusion type of medication?

[pcherry.]

Hello Dale...thanks for ur story I have polymyositis as well and I have been in a wheelchair for over 10 yrs..i have had tried so many medicines but none has really helped me..wwas in a high dosage of prednisone 60mg three times a day which only caused me to loose oxygen to my hip and now I have bone lost so I came off of it and was put on methotrexate and I did the IVIG drips for 2 yrs and nothing has changed I'm still in wheelchair no muscle strength lost and none gain what other medicine can I take that might hlp?#needinghelp

[టీఎంసీ]

Any affected inclusion body myositis patuent can give their opinions and what mefications tgey❤️follo🤠