Results are in!!

[Yellowbluebell]

Well I had my fingers crossed for my results and to be fair all I wanted was a reason for feeling so crap but now in tears because the tests came back positive for pmr. Will see the doctor next week but planning on wallowing in my own misery for a week. Thanks for all the support so far and guess I might be on the forum for longer than I expected.

[DorsetLady PMRGCAuk volunteer]

Hi,

Well good and bad news - good, at least you know what it is, and you’ll be around for a while. Bad, it’s PMR, but there are a lot worse illnesses!

Now you’re on the road, have a look at this, may give you some idea of what’s in store, and what to discuss with GP. Remember we’re always here for you.

healthunlocked.com/pmrgcauk...

[SnazzyD]

Have a good wallow, then dust yourself down and you’ll see it isn’t the end of life; it’s the end of thinking we can go through life like we’re indestructible. I hope you’ll see the benefit of Pred soon but shame you are having to wait for it.

As was said before by a few people, there is no test for PMR, just raised inflammatory markers that point to PMR when put together with a symptom history.

[Yellowbluebell in reply to SnazzyD]

Earliest I can see my gp is next Tuesday although I had to nag for that early as receptionist said only three abnormal results wasn’t a reason to see gp, (because she has a degree in “know it all”) but as he had already said to see him no matter what the results were I shot her down in flames.!! I actually then spoke to on call doctor and he said it definitely looked like pmr with the symptoms my own doctor had noted and blood results but that he wasn’t prepared to see me over my own doctor!! I worked for the nhs for nearly 20 years and still get angry with bloody receptionist and done gps

[SnazzyD in reply to Yellowbluebell]

You need more than 3 abnormal results to see a GP?! Oh, so just a catastrophically abnormal potassium and the threat of cardiac arrest is not enough because it’s only one? Blimey. I’d be reporting them, but that’s me. And a patient has to wait in pain because another one doesn’t want to upset the sensibilities of another? It’s not like they are stealing their commission! Ooh, I feel a blood vessel about to go.

[PMRpro Ambassador in reply to SnazzyD]

I agree with Snazzy - what an utterly stupid comment on the receptionist's part. When did she get HER degree in triage? I'd be reporting her to the practice manager AND the doctor I was to see.

And I hope that one day SHE develops PMR and meets with a similar reception when she wants to see a doctor.

[Yellowbluebell in reply to PMRpro]

Just had an almighty row when I asked if my own doctor could just review results and decide whether I am to wait or not. Basically my doctor isn’t there and no other doctor would feel comfortable taking over his patient enough to prescribe steroids!! Even though everyone regularly sees any of the 8 doctors in the practice usually!!! This is of course the receptionist own view. Feeling a bit despondent now because I know I will be blocked till tuesday

[Telian in reply to Yellowbluebell]

Try not to feel despondent, call and ask to speak to the practice manager, who at the very least needs to know what's been said and how that's made you feel. It's unacceptable behaviour from the receptionist - there's no logic in what she is saying and clearly doesn't understand the complex nature of her role - quoting the rule book doesn't compute with all illnesses, we're not talking about an ingrowing toenail! They're given guidelines on how to deal with patients but she clearly hasn't enough experience to know it's not a one size fits all. Difficult situations should be discussed with their seniors. Apologies to all GP receptionists but they are notorious for this, some worse than others. I'm going to join our PPG (Patient Participation Group) where all of this can be discussed. I only want to go because of the lack of disability parking at my surgery - then my husband says 'hard hats on folks' - it's not funny but they just don't get it from a patient's perspective.

[borednow in reply to PMRpro]

Oh Yes !!!!!!

[Hidden]

Well, you’ll feel vindicated if nothing else to feel as you do, why do you have to wait until next week to start the Pred? Sooner the better really!

Best Wishes

Mrs N 💐

[Yellowbluebell in reply to Hidden]

Because according to the darling receptionist three abnormal results on my bloods is not a good enough reason to see gp !!! As he said I had to see him no matter what results are she got told where to go but unfortunately she has the final say.

[Hidden in reply to Yellowbluebell]

That is unacceptable! I’d have asked her to run it past the Dr & see what he said!....

[Constance13 in reply to Yellowbluebell]

I can’t believe the things that happen in doctors surgeries in England!

[Yellowbluebell in reply to Constance13]

I wouldn’t mind but they act like they are the qualified ones not the gp!!

[Longtimer in reply to Yellowbluebell]

This is ridiculous.....but I'm sorry for you and surprised and angry at the system!.....but please when you see your GP...ask them why this rule exists...to the detriment of their patients!😕.........keep us posted.....

[suzy1959]

Unbelievable!

[piglette]

Welcome to the forum. Are they leaving you without pred in the meantime? I was virtually incapacitated before I was diagnosed. At least the rheumie gave me pred immediately on diagnosis.

[Rose54]

Hi

At least you know what your dealing with

Its hard but in a few weeks time you will feel different .

Sounds as if you have your hand full at home but make sure you take time for yourself and rest when able too

[PMRCanada]

Welcome to the site, it is an incredibly supportive forum of people who with "get you" like other cannot because we all face similar challenges with PMR/GCA. We are hear to listen, support and provide feedback if requested.

I remember the 5 months in which I was not diagnosed......scary! I really thought I had something that was fatal as my overall health, stiffness, and pain increased and spread throughout a number of areas of my body.

At least you have a diagnosis, and you now know what you're dealing with. Most folks are given a short term dose of prednisone and the doctor will monitor to see if you have substantial relief of your symptoms. This usually helps confirm a PMR diagnosis.

Dealing with the employees in the medical field (whether it be receptionists, gp, specialists such as rheumatologists) can be a challenge. Advocate for yourself and your health.

[Blearyeyed]

Apart from my shock at the comment from your receptionist that a few abnormal blood tests don't warrant a quicker appointment ( notice I say shock rather than suprise, I am not surprised by any of the patient unfriendly policies that GPs and hospitals maintain anymore) I am hoping for some guidance from you and the followers of your post as to which blood tests ( abnormal high, low or borderline) apart from just ESR and CRP give the indication of PMR or GCA as a definite diagnosis.

For yourself, I understand that being given any diagnosis can be a blow and takes time and transition to accept.

Deep in our heart, despite the fact that we know the docs are looking for a condition that is more long term and can mean lifestyle changes or swings and roundabouts finding the right drug doseage , we all secretly hope it will turn out just to be some odd infection, inflammation or muscle thing that will easily and quickly go away. It is depressing when we first have to accept the truth.

But all the contributors here are right.

There are positives, you have been diagnosed now and can start a speedier process to getting back your quality of life.

There will be changes and adjustments but as long as you keep informed and ask for support from those who can help , like the people on this site, it will be easier than you currently think.

There will need to be some adjustments in your lifestyle, you will need to be more willing to rest and ask for help, but if you let family and friends know the score , how you may not be able to plan or do things quite as you did before , they will understand and be ready to help. Or you will finally discover who your real friends are if they don't understand , and a little social spring cleaning never did any of us any harm.

Most importantly, your illness does not change who you are , just some of the things you can do . Don't let yourself , or others, begin to define you by what you have, even if it can define what people expect you to do.

Illness and pain has so many factors , but one of the best ways to cope with it is to remain positive , relax , breathe , find the strategies and changes that suit you individually and try not to sweat the small stuff. Keeping stress out of the equation is the best boost for us all.

And if you look at some of the posts in this group they will definitely lighten your heart and mind enough to make it easier going on.

Good luck.