Post Rheumatology Appointment

[Paulx222]

Thank you to everyone who gave me advice for my Rheumatologist appointment yesterday......it was my first one and I thought I'd give an update on my experience at Benenden Hospital. I have posted this as a response in my original thread too but thought I'd start a new post to see if people found it useful as a 'What not to do guide' 😂...........

So.....I couldn't get anyone to go with me because it was such short notice unfortunately but for follow ups I will......I think it's excellent advice and I think I'd have challenged a lot more with support.

Unfortunately I left with more questions than answers really.

What I got was:

A physical examination.

A Q&A where he asked me about things including family Rheumatology history, my personal history, smoking and even Cancer (this threw me but he said it was standard and he didn't expect that but it is in my mind due to the type of worrier I am).

He asked about my symptoms and I went through everything from my notes.

He looked at my bloods. Discounted the RF and said I would need to do more bloods to get a better picture.

He talked me through my X-Rays and stated that there was some abnormalities in my shoulders in that they weren't running straight which wasn't right. He said there was evidence of Arthiritis and a none spur developing on my elbow. He said that none of this should really be causing the pain and problems I am currently experiencing.

I went for a full screening by giving blood and also urine.

Then he said see you in FOUR WEEKS!!!! I nodded like an idiot and went on my merry way......I'll be ringing Benenden on Monday to say 4 weeks is too long. No way can it take 4 weeks to get the bloods back surely? Why would he only want to see me in 4 weeks?

Anyway, that's the state of play.....pretty much back at square one 😂 but at least I can push to get a diagnosis now.

Thanks for all the advice

Paul x

[Bluey-1]

Why not ring up in a few days and ask for your blood results?

[Paulx222 in reply to Bluey-1]

Good idea. Will they give them over the phone do you think?

[Bluey-1 in reply to Paulx222]

Worth a try. I have built up a good relationship with my rheumatologist and her medical secretary who gives me my blood results when I telephone him, literally the day after I’ve had them taken. They know it puts my mind at ease.

[Thelmarina in reply to Paulx222]

If you access the NHS app or Patient Access, and have given your surgery permission, you can access blood test results there. Good luck!

[Paulx222 in reply to Bluey-1]

Thanks for this.....I'll give it a go.

Appreciate it

[123-go]

I’m so sorry to hear that you came away from your appointment with no real answers. Don’t be alarmed by the questions asked- I was asked the same by my very experienced, respected consultant.

PMR can be difficult to diagnose and often a raft of tests is needed to rule out other conditions. That said, I feel that it is cruel to leave you in limbo and in pain with an appointment four weeks hence. The effect of a week’s worth of prednisolone would be strongly indicative of PMR or not.

So, you have a choice: you could ring your GP tomorrow and ask for a call back (I doubt you would get a same day appointment) and say that you have connected with the Healthunlocked charity and that members with many years of experience have suggested you ask for a week’s trial of 15mg prednisolone. Say that you can’t continue like this for another month as the pain is affecting you mentally as well as physically: from what you say this wouldn’t be a lie. If the receptionist fobs you off, ask to be put through to the practice manager.

There is an alternative which I believe someone else suggested and that is to go to your local hospital’s A and E department.

These are suggestions and it is for you to decide on your next course of action but do keep in touch with progress.

Good luck, Paul.

[Paulx222 in reply to 123-go]

Thank you so much for this reply. It gives me options and I'm really grateful. I do wish I could see him sooner and to be honest that's what I'm going to push for tomorrow.

After that I could contact the GP but he's not really keen to speak to me at the minute .

[123-go in reply to Paulx222]

I hope that works for you 🤞. Sometimes we have to be our own advocate 🙂.

[DorsetLady PMRGCAuk volunteer]

hi,

Thanks for update.

Maybe not as conclusive as you had hoped, but at least you weren’t dismissed as being too young.. which is favourite comment to many patients under 50.

.. and agree you should be able to get results of bloods quicker than 4 weeks, but he may prefer to discuss F2F with you rather than write hence the time before next appointment. No harm in asking….

[Paulx222 in reply to DorsetLady]

I definitely think you're right about the F2F but from my perspective as a private patient (I hate saying that, I think everyone should have the same expectations NHS or Private) I should really be seeing him within 2 weeks max.

Could it be that he thinks he actually won't need to see me as it will be something that only the NHS will cover? Is that the plan? I just have my brain whirring away with lots of 'scenarios'.

On reflection 4 weeks is like 'WOW' .....A month to discuss some test results......for something that is basically crippling me at times. Seems odd to me.

[SheffieldJane]

How disappointing. I wonder if they are going skiing for Christmas?

If you draw a blank again, I would go to A&E and prepare for a long wait, take a book and a flask. You cannot be left in such pain. Maybe they dismissed PMR because of your young age inwardly. Don’t give up!

My first experience of a private Opthalmologist was equally disappointing. A perfunctory examination and a £200 bill. My well equipped optician, so much better.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

I wonder if they are going skiing for Christmas?

Must admit that did cross my mind too!

[DorsetLady PMRGCAuk volunteer]

I know.. and blood tests are actioned same day as taken [in most cases] and results on hospital system pronto- but the delay is a doctor viewing them, interpreting them. commenting on them - only then can they be passed to patient.

Totally agree it should be quicker...don't know what his rationale is..and it doesn't matter to him personally who treats you in future. .he is being paid by Beneden for this consultation.

[Paulx222 in reply to DorsetLady]

Exactly my thoughts I don't understand the 4 week element at all and I'll ask tomorrow when I call. Seems like decades away to me!

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

Yes... it does at times...😏

[PMRpro Ambassador in reply to Paulx222]

Depends what blood tests were requested in the differential diagnosis - some can take a few weeks at a specialist lab.

[Merryfield]

my gp gave me an immediate prescription for steroids after my right arm…then several weeks later, my right hip/leg became weak and painful — before the bloodwork even came back (sed rate of 128!). in less than 24 hours after starting steroids, symptoms gone. one of your docs should have done the same.

[random901]

Yep, I nodded and smiled -at first! But I have learnt to be more proactive in this business. Apart from going up to the hospital path lab for blood tests, I get phoned once every 4 to 6 weeks by Rheumatology. If I need advice or to report anything, I phone them and one of the team gets back pretty quickly. Compile a list of questions/queries beforehand. Write down their response, if need be. For me, such a wealth of new information is difficult to take in! All the best, Paulx222

[Hidden]

Hi Paul...I really feel for your situation...the pre-diagnosis period was excruciating and infuriating for me. Constant pain and lack of sleep whilst having to wait weeks before blood could be even sucked out of my arm, let alone be tested. When the results eventually came back, things got moving fast as they were pretty bad!

One thing that I did might be of interest to you. To keep me sane, I was taking Naproxen whilst waiting for the rheumatologist appointment. It doesn't help everyone but it gave me a little relief. A week before my appointment, I stopped taking it and took nothing but Codeine for the little bit of pain relief it provided. I didn't want any anti-inflammatory drug masking the symptoms for my appointment with the rheumatologist. It was a week of hell but when I saw the rheumatologist he was unequivocal..."you have PMR". The appointment was interesting. He was the lead rheumatologist for the hospital and he had a student with him so I got to hear some of his methodology. He said (to the student) "As rheumatologists we look at the clinical presentation, the symptoms, much more than at the blood results when making a diagnosis".

I wish you the very best of luck...you really have to push at each stage and I feel sorry for those that cannot self-advocate or have no-one to advocate on their behalf...

[Paulx222 in reply to Hidden]

Thanks so much for the reply. This has been a pretty mad few weeks I can tell you 😂.

Just feel like everything has been turned upside down! But, as you say, it's the lack of urgency to help/diagnose that is the most infuriating part of all of this.

Everyday I feel as though a new joint is becoming affected.....currently my right hip is painful with clicking on movement to add to both the shoulders, the right elbow and right hand index and middle finger. It's infuriating now I look back on that appointment that I just sat there and accepted it as if I was completely starstruck by actually having a Rheumatologist in the room examining me.

I should have been a LOT more demanding.

Stupid of me. But I'll chase up with the company/hospital.

Good advice on the Naproxen, I do find a bit of relief from them or Diclofenac although I wonder if it's my mind playing tricks on me.

I have joint damage as the Rheumatologist explained so I'm aware this could be RA rather than PMR but for goodness sake......PLEASE TELL ME so I can get some treatment and start trying to get on with my life.

[Hidden in reply to Paulx222]

Hi Paul...you will get there...in the end. I am glad that my healthcare people didn't rush to a conclusion. I didn't want to be treated for RA when it was actually PMR. Easy to say that now that I am feeling much better but it wasn't all that long ago that I was in your shoes.

Hang in there and good luck!

[Daffodilia]

May be go back to GP - if prednisolone works it can show it is PMR - worth asking?

[suzy1959]

Hi Paul,

I use Benenden Hospital quite a lot. Are you local like me? I am wondering if your appointment was through the membership scheme? If so, the problem with that is that you may get a diagnosis , eventually, but they are not interested in ongoing treatment, so you would have to find another Rheumatologist anyway.

When I was looking for a Rheumatologist way back in 2013, none of the local ones were interested in PMR and so weren’t any good!Eventually I found my 4th Rheumy in Surrey on NHS and get a much better service now. As you have rightly realised, we need to develop our own self-advocacy skills and find the right medical care for ourselves. My PMR path has not been at all straightforward so I am grateful to have a Rheumatologist who I can trust knows his stuff as it can be very complicated!

Do send me a private message if you want to discuss Benenden and local Rheumatologists in more detail!

[Flinders61]

I was in the UK (from Australia) when I became unwell with what turned out to be PMR. In desperation I presented to A&E Colchester & received fabulous treatment. Diagnosed & discharged with prednisolone & a plan. The GP system was no help & whilst not suggesting A&E is the best option it worked for me until I got back to Aus. I too was rattled by the cancer questions, especially as an oncology nurse. All seems so overwhelming when feeling so unwell. A trial of steroids seems a the obvious answer & hopefully your GP will agree. Take care.