Found at appointment yesterday- no reflexes- in either leg. So was sent to ER for series of MRIs 3 of back, spine and neck with and without contrast. Nothing blaring there they are sending me to a neurologist..Has anyone ever experienced this ? They say it could be from PMR or prednisone .
Thank you!
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Mks9558
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I've never heard absent leg reflexes mentioned in any text about PMR but I believe that they may be impaired and even absent in polymyositis which should be a differential diagnosis for PMR as the early symptoms can be quite similar. Did they ever do a blood test for creatine kinase?
Hi there PMRpro- it is the strangest thing- was doing very well -when Friday had trouble suing stairs and became very wobbly walking jus a short distance to the kitchen. Then the nighttime in continence started- I had no inkling but would wake up soaked. Saw rheumatologist yesterday she sent to ER for quick MRIs saw 4 drs there all who insisted on hammering in my knees and scratching my feet - they are baffled but the MRIs do show broad based disk osteophyte complex contributing to severe central canal stenosis.
Rheumatologist does not feel this is PaMR based on the amount of Prednisone I have had over the last 4 months. One more thing...
Hoping for a quick resolution for you. I'm so sorry you're going thru this, I'm sure it isn't easy. I will be praying for you and am sending soft hugs, Take care and breath deep. Kitty
Thanks all, with the holidays I am sure my referral will take some time. The good news is except for this weakness and the lack of reflexes I am feeling much better/ the prednisone side effects have waned a bit- still have a fat face- if you put a pin in it it would pop🤯. But headache has been gone for 3 weeks & leg and arm pain are gone-woohoo!
Rheumatologist called tonight and still believes it is steroid induced myopathy. So will start physical therapy to build up strength and continue to taper as slow as possible to get to the point there is no weakness. That’s the plan until next week at least.
I have had steroid induced myopathy, not every doctor accepted it I had scans and they said it was probably arthritis, it might be mild arthritis because of my age but I don't believe it just came on overnight when I coincidentally started steroids. When I was first diagnosed with GCA and on 60mg I went from running after work to not being able to climb the stairs in weeks. Fortunately no incontinence I feel for you coping with that too. Pilates has been my saving, though my legs are weak, I have been doing Pilates two years. It has been wonderful and I can use it to help with pain. I can walk about three miles with the dog on a good day, though I will probably never run again. My Pilates coach is also a Physio and he is very helpful because my tendons have softened and I have had a few tendon tears that he fixed before my NHS appointments came through.
Yes, I found Pilates wonderful for the 5 years I had PMR without pred - kept me upright and fairly mobile although I had to do an aquafit class BEFORE the Pilates to be able to do it. I had a great teacher and an Iyengha yoga teacher too - they, plus my Bowen therapist and my hairdresser, are the only things I have ever missed about leaving the UK!! They were all irreplaceable...
Thank you Hellyowl- how long did it last? I will definitely look into Pilates, there is a studio just around the corner.
PMR pro, I have also found a Masseuse trainer in the Bowen method, was the lucky recipients of a 2 hour massage last week! So grateful my employer covers 36 per year.
Trying to count my blessings before the next dr visit to the neurologist. As mentioned rheumatologist believes it is steroid induced so until someone proves otherwise we are going with that diagnosis.
Merry Merry!
I hope all of your troubles stay away and your health is not a worry this holiday season.
I had severe spinal stenosis which presented with your symptoms, including incontinence. Surgery remedied the problem, and improvement was immediate. Kind regards, Jerri
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