PMR diagnosing protocols?

[billinSurbiton]

My NHS GP is a very fine Dr. I have faith in him, even if he got the Steroid tapering routine wrong ( see the drama from .LAST week 🙄)

He is the one to diagnose me with PMR, based on my description of symptoms.

Is there any other method to diagnose or ascertain (spelling?) PMR?

He IS sending me to a rheumatologist, so I will have s second opinion of sorts.

I ask this because There are other things going on with me, of course, as I go into my 60s and fall apart: an MRI of my brain showed moderate to severe “small vessel syndrome” ( google it); an MRI of my neck showed a disk problem at C4 C5

with spinal cord compression. I’m going to a neurosurgeon for an opinion. St George’s Hospital has one of the most highly regarded Neurology departments in Europe. We shall see ..

but, the PMR diagnosis???

Thanks

[Celtic PMRGCAuk volunteer]

Bill, no sadly there isn’t at the moment. Doctors can only go by your symptoms, but blood tests to check for inflammation (ESR and CRP) can help in many cases although about one in five patients with PMR do not have raised markers. It I is mostly a diagnosis of exclusion - ruling out other possible conditions. If a Dr suspects PMR, a short trial burst of steroids can be prescribed and if the patient has around a 70% improvement within a week or so, the Dr is likely to accept that as confirmation of diagnosis.

[billinSurbiton in reply to Celtic]

Thanks. That’s just what he did 😊

[Celtic PMRGCAuk volunteer in reply to billinSurbiton]

Hang on to him - you have a good Dr there in Surbiton, far better than the three I encountered here in Ashford! One said it was an allergic reaction to my new BP pill, another gave me anti-sickness pills and another said, “I don’t know, keep your routine appointment with my partner next week for him to follow up!”

Don’t suppose the Assembly Rooms still exist in Surbiton - one of my Saturday night haunts in my dancing days many moons ago!

[BonnyQuine in reply to Celtic]

Definitely a bit hit n miss getting an accurate diagnosis. It's GCA that I have. Saw a few doctors before being diagnosed, including an (expensive) private Consultant who had an excellent 'bedside manner', spent an hour giving me an extremely thorough examination, and then wrote to say that I was suffering from stress headaches. Luckily for me, OH thought that was nonsense, and we managed to speed up the byzantine system at my GP practice, where I was at last diagnosed (phew!).

[Celtic PMRGCAuk volunteer in reply to BonnyQuine]

BonnyQuine, thank Heavens for the common sense and support of your OH. I had PMR initially (bed bound for 4 months) which both GP and rheumatologist failed to diagnose. GCA joined in the fun within the following 12 months, again with several doctors failing to reach a diagnosis. I will be eternally grateful to the amazing pharmacist who finally took the time to do some online research and suggested PMR and GCA. It is so very frustrating when loads of work has gone into the setting up of a scheme for doctors to fast track patients to rheumatologists immediately they suspect GCA, only for many doctors to fail to recognise it in the first place! It sounds as though someone up there was looking out for us and we are blessed that we still have our vision.

[billinSurbiton in reply to Celtic]

Ummm.. pardon my ignorance; what is an OH?

[piglette in reply to billinSurbiton]

OH = Other Half!

[Celtic PMRGCAuk volunteer in reply to billinSurbiton]

Bill,not “ignorant at all”, just me being lazy. Piglette has kindly answered on my behalf. I must remember to speak ‘proper-like’ in future!😋

[billinSurbiton in reply to Celtic]

Oh sorry! I missed your question the first time I read your answer. Yes, the assembly rooms are still there; they were purchased by Surbiton high school for school functions, although they are let out for public functions. I am sorry to report that I have never seen any advertisements for dances or club nights. I live quite close to then, just down the street from Saint Marks Church

Hugs 🤗,

Bill

[Celtic PMRGCAuk volunteer in reply to billinSurbiton]

Well, that was a trip down memory lane! I used to meet a friend there - I was from Roehampton and she was from Epsom so it was a sort of half way point for us to meet and dance the night away!

[Telian]

Hi Bill,

I'm as confused as you are about PMR as have lots going on like you - seeing a Neurologist on top of everything else. I've got GCA and PMR was mentioned last year, as I have symptoms that could be it - painful shoulders, neck, sore spine stiffness etc etc. (are they the symptoms?) so believed it was PMR and as I'm on pred for the GCA it made no difference to me in those terms but was always confused about PMR - did I have it or not, all I know is I have a lot of pain in the areas mentioned.

However on Friday I had my 6 monthly consultation with Professor Dasgupta and he told me my bloods were good (ESR 5 CRP 2) and then unexpectedly he said he didn't think I had PMR but Osteoarthritis (I've had 10 surgeries on my hands, wrists, elbow and one shoulder). So he did an ultra sound on my shoulders and confirmed OA was the cause of my symptoms. I came away none the wiser about PMR and now I've had time to think I'm not happy with the OA diagnosis either because that is not going to improve any time soon! at least with PMR it can go away eventually, I understand.

For you Bill seeing a Rheumy should get the diagnosis..

Good luck!

[PMRpro Ambassador]

A PET-MRI should show the areas of inflammation - but it depends on the patient being on no pred to be accurate. Even a dose of 5mg is enough to suppress the fluorescence from the inflamed areas.

Otherwise - as Celtic says, it is a diagnosis of exclusion: exclude other things and make the decision on symptoms and blood tests showing inflammation (maybe).

[BonnyQuine]

Definitely a bit hit n miss getting an accurate diagnosis. It's GCA that I have. Saw a few doctors before being diagnosed, including an (expensive) private Consultant who had an excellent 'bedside manner', spent an hour giving me an extremely thorough examination, and then wrote to say that I was suffering from stress headaches. Luckily for me, OH thought that was nonsense, and we managed to speed up the byzantine system at my GP practice, where I was at last diagnosed (phew!).

Hang on to your decent GP!