Myositis blot - anyone done this? Results?

[MartinK]

Hi all, Im wondering if any of you with muscle fatigue have been tested for myositis.

I did Myositis Blot and I have positive antibody SCL100.

Did your doctor help you interpret this? What are your results? Do you know anything more about this antibody? If i understand correctly it can indicate overlap syndrome and polymyositis.

 

[lenora]

Hello @MartinK, an interesting topic. Since muscle fatigue affects most of us, I'm sure that many are like me, no, we haven't been tested.

Polymyositis sounds like a rather nasty affair. Very similar to late stage Parkinson's, isn't it? About 2 yrs. ago I stopped being able to climb the stairs leading to the upper floor of our house. It doesn't matter, as our bedroom is downstairs....still, it has given me pause for thought. My walking is fine for the most part. I have osteoporosis which lead to a fractured pelvis and well, on and on things go. I'm fine, though.

I'll read up about the Myositis Blot test. I do have autoimmune illnesses, so here we have one more possibility. How are you doing? Any changes that you feel are worthwhile? You've certainly tried hard and I continue to wish you well. Thanks for the information...we should have it. Yours, Lenora

 

[MartinK]

hey @lenora I'm surprised more people haven't done this! It seems like an important test to me...

Polymyositis can apparently also cause breathing and swallowing problems, but luckily I don't have these problems.
My problems are related to muscle problems.
I can't strain them, I can't heat them or massage them. All of this gives me severe PEM.

Luckily when I'm resting I feel relatively well.

 

[Judee]

Not really answering your question but thought you might find this thread interesting: https://forums.phoenixrising.me/thr...-appelman-wust-et-al-2024.91340/#post-2450705

Also although not always accurate, I'm finding using AI helpful sometimes. I use Perplexity.ai because it's free and doesn't require me to do a login. You could see if you can access it and try your question there.

 

[Zebra]

Hi all, Im wondering if any of you with muscle fatigue have been tested for myositis.

I did Myositis Blot and I have positive antibody SCL100.

Did your doctor help you interpret this? What are your results? Do you know anything more about this antibody? If i understand correctly it can indicate overlap syndrome and polymyositis.

Hi! So in the US this is known as a Myositis Panel, often performed at the Mayo Clinic.

Your positive antibody points to a Scleroderma/myositis diagnosis, but on its own is not diagnostic. Have you spoken with your doctor about next steps?

Usually this would be an EMG and possibly a muscle biopsy.

I hope you will keep us posted on how things unfold for you!

 

[MartinK]

@Zebra
Now I am trying to find a suitable doctor to help me with this. It is not easy.

Anyway, thank you very much for the help with the interpretation!

I had 2x EMG in past, but results was good.