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Has anyone been diagnosed with Polymyositis?
I am not sure if autoimmune disease in the right group. Within the past 60 days I have been experiencing severe weakness in my shoulders / upper arms and both thighs in my legs. I initially thought that it could be related to a cervical spine issue from a November 2024 surgery, but my Orthopedic surgeon ruled it out and indicated the fusion was successful. I searched AI and the number one item is AI returned was polymyositis. I was not looking for this specifically, but my brother was diagnosed with it three years ago. I also read it is rare for siblings to both have it. I am a 68 year old male and my brother is 69.
If you have or know someone that has had polymyositis, what were your symptoms and how is it managed. I see my Neurologist at Wash-U on 9/18. It looks like a myositis blood panel can be ran, but I read that a muscle biopsy is the gold standard. Thank you for input.
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Good morning. My 35 year old son developed the same symptoms in late 2023/24 after running a marathon. He could mo longer raise his arms and his quad weakness made getting out of bed/steps/going from sitting to standing bery difficult. The orthopedic doctor sent him to the neurologist. He had a MRI of legs and shoulders that showed atrophy, EMG that showed decreased nerve function, muscle biopsy that was positive for nemaline protein. He had genetic testing thst was negative. The neurologist sent him to the NIH, and from there he met Dr. Mammen at Johns Hopkins who thought he had either nemaline myositis or SLONM (Sporadic Late Onset Nemaline Myopathy.) He is 1 of 200 people in the world woth this disorder so not much is known.
He went thru 3 months of prednisone and IVIG with not much improvement and is now being treated for SLONM with chemotherapy and prednisone. We are waiting to see if/ when he will need an autologus stem cell
transplant. Until this he was 100% healthy. He was very lucky that the orthopedic and the neurologist were willing to say "I don't know what is wrong" and get him to the right course. We are hoping for a good outcome and I wish the same for you.
A good reumatologist is in order, sounds like Polymyalgia rheumatica. At least the symptoms are similar.
I have been passed around to several specialist including a Rhleumatoligist who did absolutely nothing. Hoping today's Neurologist visit sheds some light on it. I will mention your observation. Thanks
Sadly, I was with a rheumatologist for 4 yrs with symptoms of PMR and wierd ana's with no diagnosis. I finally went for a 2nd opinion and he said PMR. Finished treatment with him and went on to 3rd who diagnosed Sjogren's. She tested for every thing. She really knew her stuff. It can take awhile.
I had this onset in January. It took awhile to diagnose. At first polymyalgia rheumatica (PMR) was suspected, but then I got darkening of the knuckles and trouble swallowing, which are characteristic of the related dermatomyositis.
I was given a course of Prednisone, which didn't do much.
The tests in August showed my CPK (muscle enzyme) and CRP (marker of inflammation) were normal, but those can change by my next tests later this year.
My doctor has a wait and see attitude.
The condition has been fading slowly, but I still have moderate muscle weakness and some pain when stretching my arms and legs.
I feel like I am slowly returning to normal, although I know it won't ever be completely gone. If it does get worse my doctor said he will prescribe more aggressive treatments.
I'm very sorry your son and the others here are going through this. Hopefully there will be good news soon.