Wrong diagnosis

[Gyspysmum]

Hi everyone,

I don't post very much, a bit of a lurker but I will be leaving the group anyway but thought I would share my recent update.

Three years ago after raised infection markers at my previous doctors I was diagnosed with PMR and put on 40mg steroids, tapering dose. I was not referred to see a rheumatologist and as I read a lot of your posts on here I could see there were similarities to how I was feeling but not really, but I thought the Dr knows what he is seeing, so kind of figured that I maybe was experiencing different symptoms.

Fast forward to a month ago, moved 500 miles, registered with a new dr, and started having issues with my knee, dr was very good, had an assessment with a physio who alongside the dr recommended an MRI. Went for a face-to-face appointment to get a steroid injection in my knee. Told the dr I was already on pred and he asked why so explained the situation.

He took one look at the only blood test that I had had with my old surgery and said 'that's not PMR'

Let's get some more blood taken.

Anyway, I have RA, and RA synovitis and I also have medically induced type two diabetes because of the pred which should not have been given to me in such large doses without any monitoring at all.

I am now tapered down to 10. in absolute agony, seeing a rheumy in three weeks on an emergency appointment as my infection markers were at 279, had another blood test on Friday and the results on Monday were up again.

My blood sugars were up at 79!

I just wanted to say, if you do not think you are getting the right/proper care please follow your gut and ask, for a second opinion, something because I now have to fight to get better. I am so overwhelmed by everything but you have all been such a support to me over the years, even if I didn't post that I wanted to update you all x

Thank you

Marie x

[PMRpro Ambassador]

Well - I can't resist a "what did I say?"!!!!

In your very first post I said

"Hmmm - the hot and painful joints doesn't really fit with PMR but it is possible to have a polymyalgic onset of some forms of inflammatory arthritis. Or to have both. Have you still got the shoulder pain? Has the GP ordered any imaging? x-rays at least, preferably ultrasound."

Your GP was totally wrong from the start on - you were very young, not impossible BUT, and he started you on far too high a dose for PMR which was enough to provide relief for an inflammatory arthritis so taking away that bit of evidence. And you were atypical - young, not entirely usual PMR symptoms with the hot joints so you should have been referred to a rheumy, Covid or not, I would be filing an official complaint, especially since you were never monitored and have developed real problems.

Anyway - now they have finally got on the right track, I hope it all goes a LOT better and find support with the NRAS forum maybe. But we are always here if you have any questions we might be able to help with. And do tell us how you get on sometime.

What a shame you didn't tell us this sooner - we would have pushed you to seek proper care. At the very least regular blood tests.

[Gyspysmum in reply to PMRpro]

Hi Pmr, It's ok you can have your ' i told you so moment' problem is I thought I could trust my Doctor, and with no disrespect meant I had just joined this group and was totally overwhelmed with everything and why would I distrust a medical practitioner, especially after the dr before that said there was nothing wrong with me. It was just a relief to get something that got rid of my pain and allowed me to get my life back. It is easy to say in retrospect or with the knowledge I have now but I was young and stupid clearly.

I lost my dad and brother in that period, was made redundant, and had covid then pneumonia and then a blood clot so I just trusted the Drs.

Anyway, I have already had a Mri, and an ultrasound on my wrists, which showed the classic RA markers and Snivitus and as I said am going to see the rheumy in three weeks.

I will be putting in a formal complaint because effectively they didn't do the proper tests, I know this now and so will be following that up once I have had my appointment.

[PMRpro Ambassador in reply to Gyspysmum]

Good girl! To be fair, late onset RA CAN present looking just like PMR and there is no way of distinguishing who has which at the start but when there are a load of other red flags the patient NEEDS a rheumatologist even for something too many doctors regard as "only" PMR. I know - we are just a load of old women gossiping on social media - and a lot of doctors get very iffy about us. In which case they should do their job properly and the guidelines for PMR are quite clear about asking an expert if the patient is atypical.

You sound to have someone rather better now - and do let us know how you get on.

[Gyspysmum in reply to PMRpro]

If the main thing YOU take from this is that I think you are 'gossipy old women on social media' then thats quite sad really. You may have the most amazing knowledge, experience, and everything else, but I actually don't know you so it is actually very astute of me to follow what I thought was a Dr's Genuine advice.

Take care

[PMRpro Ambassador in reply to Gyspysmum]

I didn't suggest YOU thought that but it is what a lot of doctors think about any information patients gain from forums on the internet like this one. We haven't got a medical degree so can't know anything is all too often the response we meet. It is something that has been talked about a lot. That many of us have been healthcare professionals or have relevant biomedical training and degrees doesn;t count.

[Mayadill in reply to PMRpro]

Oh no, no, no, it's funnier than that. There are a few for whom the rest of the human race can't know more than they about anything. Again of course this syndrome is not peculiar to medics. There is a C19th rhyme from Balliol taking the mick.

First come I, my name is Jowett/There is no knowledge but I know it/I am the Master of this College/What I don't know isn't knowledge

Jowett was in fact a theologian.

[piglette]

I am so sorry you went through all that due to an incorrect diagnosis. At least you seem to have a good doctor now. I often wonder how many people go through unnecessary misery due to the ineptitude of some medical professionals.

[Gyspysmum in reply to piglette]

It does make you wonder doesnt it? x

[ImC_]

good luck Gyspysmum and I hope things go much better for you now.

[Gyspysmum in reply to ImC_]

Thank you ImC_ Me too!

[sidra1968]

Glad you finally have good Dr. I have a fairly decent list of doctors who were wrong (not just about me, either).

[Gyspysmum in reply to sidra1968]

IO genuinely belive that they are relying on us not questioning what they say, I am more upset that I feel like I have wasted three years and ultimetely had no actual proper treatment

[tempusfugi]

Thanks, Gyspysmum, for sending this. It is helpful to hear your story and I do hope you soon get some relief from your suffering. I am going for a second opinion to a new rheumie on Saturday, so will see how that goes. I wish you well.💞

[Gyspysmum in reply to tempusfugi]

I hope it goes well for you, I am nervous about seeing the Rheumy as part of me wonder how I can trust now anyway, its all very overwhelming

[Mansplainer101]

When you say..."my infection markers were at 279" which markers/tests are you talking about? Perhaps different countries use different tests because judging by my tests/results 279 seem astronomical!

For comparison when I was diagnosed in the US these were the tests and their results:

Rheumatoid Factor = 11.4 [Reference Interval is <14]

Sedimentation Rate-Westergren = 32 [Reference Interval is 0-30]

C-Reactive Protein, Quant = 15 [Reference Interval is 0-10]

[PMRpro Ambassador in reply to Mansplainer101]

CRP can reach those levels. ESR can go above 100, reaching 150 and above in autoimmune disorders. Exceptionally high levels mean an adaptation of the test, timing for much shorter period and multiplying up which inherently introduces errors.

[Gyspysmum in reply to Mansplainer101]

I can see pmrpro has answered, I genuinely don't know, they just said it was high and my diabetes nurse said it was the highest she had seen ?

[Bcol in reply to Mansplainer101]

When diagnosed with PMR my ESR was 54 and CRP WAS 131.4

[HeronNS]

Thank you for sharing your story. Best wishes for you as you appear set on the right path now. You're always welcome here if you care to pop in occasionally to let us know how you're getting on.