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Myopathy?
What neuromuscular disorders include myopathy as a symptom?
In Jan, my eye crossed 3x
I have a history of:
Bells Palsy, facial Weakness, lazy eye, enlarged thymus…
Spasms in back, legs, feet. Off balance, days where I’m confused…
I have nodules and a cyst in thyroid
Auto immune psoriatic arthritis
DJD
Does this sound familiar to anyone? I’m scheduled to se a neuromuscular dr and am wondering what myopathy alone means and what it means in light of the other things…
Thanks,
Nemo
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Hi @nemo1, While we wait for members with experience to respond, I thought I would share a couple of references that might provide some of your answers.
-- Inflammatory Myopathies Fact Sheet: https://www.ninds.nih.gov/health-information/disorders/inflammatory-myopathies
-- Autoimmune Myopathies: Updates on Evaluation and Treatment: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277300/
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4 ReactionsThank you John. Its such a time for us - dealing with health issues, that kind of don’t have a home, a diagnosis that would cover a long history. It’s time for answers. Thanks again, I’ll read up on what you have provided.
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3 ReactionsDoes the rheumatologist work a patient up for myopathy causes? Can a neuromuscular doctor do the same? I have appointments coming up for both. My neurologist suggested I see the NM doctor. In these articles it looks like a rheumy might do work up and muscle biopsy ?? I’m a bit confused.
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1 ReactionIt's understandable to be confused. Hoping you can get some answers at your upcoming appointments. Do you write out your questions for the doctors before your appointments? I do that so I don't forget to ask in the heat of the moment. If you haven't tried it before, here's a good site with information that might be helpful:
-- Patient Revolution - Tools for the visit: https://patientrevolution.org/visit-tools
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4 ReactionsThanks for the “cards”. Great idea. I usually write out bulleted lines but sometimes don’t get to them with the doctor. These cards will help get to the point quickly and efficiently. They will help with each provider/specialist. Its to the point and thats got to fit in a 15 minute visit! Thank you.
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2 ReactionsThis is something I found to be interesting. How was your psoriatic arthritis treated?
https://pubmed.ncbi.nlm.nih.gov/24037820/
My rheumatologist has always told me that having one autoimmune disorder puts me at risk of having other autoimmune disorders.
I was diagnosed with reactive arthritis with uveitis at the age of 32. These two disorders are part of the spondylitis family of autoimmune disorders. Psoriatic arthritis is part of the same family.
https://www.myspondylitisteam.com/resources/spondylitis-types
I took prednisone frequently for flares. My ophthalmologist would prescribe mega doses of prednisone to quickly get flares of uveitis under control.
When I turned 52, my rheumatologist added PMR to the mix of autoimmune disorders I already had. I now have chronically elevated CK levels which suggests a myopathy is also happening. My rheumatologist doesn't know why my CK is elevated. Myopathy can be autoimmune related or myopathy can be caused by a medication such as a statin or prednisone. My CK level stayed elevated when both medications were stopped so not likely a medication I take.
I continue to have muscle wasting which could be PMR related.
https://pubmed.ncbi.nlm.nih.gov/26915593/
At this stage my rheumatologist just says that I have a full range of rheumatology problems. Now I just seem to get "idiopathic" problems which is a fancy term for "I don't know why!"
https://medlineplus.gov/genetics/condition/idiopathic-inflammatory-myopathy/#:~:text=Idiopathic%20inflammatory%20myopathy%20is%20a,can%20occur%20at%20any%20age.
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4 ReactionsThanks for all the information dadcue. It sounds like you’ve been through so much starting at such a young age! Come to think of it, the Bell’s palsy and facial weakness when I was 31 and 32. Thats when the weird stuff sort of started. I digress. I will look into the links you provided. She wanted me on some medicine that messes with your immune system. (I can’t remember its name.) That probably covers most of them. I think it was a dmard. She wanted me to start it to prevent its spread to other joints. She tried me on low dose steroid to see if this med would help. It did help. But I’m not confident about trying such a serious med. We thought seriously about it but decided against it. I didn’t have active disease at that time, so I thought it might be too aggressive a treatment. I have enough issues without opening myself up to other things. I thought if it “activated” then I would reconsider depending on what’s happening.
Thank you for all the information.
Do you know if general anesthesia could bring on myopathy? It happened a day later.
Myasthenia was on that list. This was looked into some years ago. Hmmm. Ill bring the myopathy to both rheumy and neuromuscular dr.
I looked at my notes. My rheumatologist wanted me to start Enbrel (she also mentioned two others, don’t recall). I should keep better notes.
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