Myositis UK

New here, still waiting for treatment

I’ve been back and forth to hospital since August presenting with muscle wasting. Have seen rheumatology, neurology and oncology. Latest thinking is that my polymyositis is being caused by a thyroid issue. I’m waiting to see which department at the hospital will take over my care. My CK level is currently 8000 and I have a lot of muscle wasting in my leg and core. Stairs are really difficult as is the effort needed to keep myself upright. My swallowing has also been affected and one arm also is weaker. EMG tests showed my nerves are ok. Waiting for muscle biopsy results. Wondering what the next steps might be and also how easy it will be to get muscle strength back, especially with swallowing. I’m 53 and not currently on any medication.

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Hi heliports,

I have polymyositis with a Scleroderma overlap, my muscles were in a very bad way all started in 2014. I was in a wheelchair for over a year, and spent 2 months in hospital bed, but I kept doing my exercises in bed to get my legs working again. It was hard work but I only need a walking stick now and try and walk a few hundred yards every day to keep muscles going.

Swallowing is affected and I could not lift my arms, I can’t eat a lot of foods because of the choking risk but I can lift my arms now.

Don’t give up on yourself, a few leg lifts, arm stretches, try it with music and you can try and get some of the muscles working again.

I’m on mycophenolate mofetil and it has made a big difference to my well being.

I see lots of different consultants but my rheumatologist consultant is the lead on all my treatment.

Good luck🏋️‍♂️🎼

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Hi I had a lot of the same symptoms as you before I was diagnosed with Dermatomyositis after many hospital tests including a muscle biopsy.You may be put on steroids for a while which helped me.I am 53 also and find steps difficult too.The swallowing problem has improved a lot.I now take Azathioprine as I was intolerant to mycophenolate.Hope you get a diagnosis soon and a treatment plan in place

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I saw my oncology consultant this week and she had just got my muscle biopsy back. Apparently it shows more indication of Dermatomyositis rather than polymyositis but I don’t have any of the skin symptoms. They are also saying that it could be a paraneoplastic cause so oncology will continue to monitor me. I’m seeing rheumatology on Tuesday so hope to get some answers and see the muscle biopsy report.

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