Misdiagnosed with PMR
Posted , 8 users are following.
Hi all. After going to doctors for 13 years with specific pains he diagnosed PMR & put me on pred. I'm 49 now.
I did, after the initial dosage, feel some relief, but since then pains kept returning & they kept suggesting upping the dose.
I wasn't convinced & eventually they gave me an MRI of the lumbar spine as I was experiencing bladder, bowel & leg problems.
The MRI showed Spondylitis, Spinal stenosis, Osteo arthritis & a tear in the spinal cord.
The doctor didn't want to answer my questions as said wasn't their dept anymore & referred me to the chronic pain unit at local hospital.
I wanted to share this just in case anyone else is having a similar experience.
I'm still not sure if my referral is adequate or if I should've been on pred in the first place.
Thanks for listening 😍
0 likes, 10 replies
EileenH Sars77
Posted
What sort of doctor? And what sort of spondylitis? It too can be a chronic autoimmune inflammatory disorder and is actually one of the things that should have been ruled out before suggesting PMR. It also responds to pred though often it is very difficult to wean off pred without the symptoms returning. And if you are under a rheumatologist - yes, it could well be their department.
If you had had these symptoms for 13 years and are only 49 now - I'm surprised anyone considered PMR in the first place.
rocketman42 Sars77
Posted
It does not have to be one or the other.
I had spinal surgery in 2012 for multilevel spondylosis, spinal stenosis, foraminal stenosis and myelomalacia.
I then developed PMR several years later.
I now deal with issues from both.
marian56227 Sars77
Posted
feel so sorry Sars. I've been on steroids for 3 yrs for PMR & they've done nothing. Now finally a few months ago,my Dr said I needed to come off the steroids as I obviously haven't got PMR as the tablets haven't helped me. So angry, as well as in as much pain as ever, it's all there horrific side effects I've suffered. We have now moved to a different part of the country, so I'm hoping for some better treament. I'm down to 1mg preds now so nearly off the darn things. Good luck to you & hope you'll get the right treatment now.😍🤞
EileenH marian56227
Posted
What do you mean when you say "they have done nothing"?
marian56227 EileenH
Posted
I have had no relief from pain at all, in fact it's got worse & I'm walking with a stick which I wasn't before.
ptolemy marian56227
Posted
EileenH marian56227
Posted
I can only echo ptolemy. And I would complain about the doctor. If a moderate/low high dose (up to 25mg) doesn't do anything the chances are it isn't PMR and a rethink is called for. No ifs or buts...
marian56227 EileenH
Posted
Yes I'm thinking the same. We have recently moved from England to Scotland & I'm hoping for better results here.
EileenH marian56227
Posted
Depends who you are under - and there is no choice in Scotland. However - I can't envisage anyone with any gumption leaving someone on pred for 3 years when it isn't working...
Where are you? You know there is a Scottish PMRGCA charity?
mary19068 Sars77
Posted
What a to do!...in all those 13 years were you ever given an MRI scan? considering you were still having pain when taking high doses of pred. I would have thought the doc would have tested you for other painful conditions. Were you ever tested for the HLA-B27 gene which shows in approx 50% of the population with Spondylitis. Shame on your doctor who has not had the good manners to discuss it with you and has passed the buck. Thank you for sharing your experience it may well help others who are still experiencing pain even though they are on high doses of pred...