Rheumatologist Appt Advice

[Paulx222]

Hi

I recently posted about my RA/PMR issues and I have been pretty stressed having woken up about three weeks ago with excruciating shoulder pain.......other things have followed (a bit of finger pain).

Had bloods showing slightly raised CPR, slightly low Vit D and RF Negative.

Absolutely drained, hip pain after resting or driving and minimal improvements after NSAIDS......

That's the run down......my GP has referred

me and thanks to the advice I've received, I pushed Benenden for a specialist appt and incredibly I have one tomorrow with a Mr Khan, Rheumatologist.

So......thoughts move to tomorrow.....I wondered if people could advise me on what to say, what to push for and what to do so I get my money's worth.

Should I mention previous Bursa elbow infections for example? What should I be asking him? Should I be pushing for scans etc or just leave it to him? I need a diagnosis.....I need something because I am really struggling and my GP has passed the buck and so everything is pretty much pinned on this.....so no pressure folks!!

Any ideas or thoughts gratefully received.

Thanks in advance

Paul

[SheffieldJane]

Definitely make a bullet point list in order of importance - doctors are only human and get bemused with too many seemingly unrelated symptoms to consider. You could have a copy of your clear list to leave with them.

An MRI scan and or a Vascular Ultrasound are the tests that bore fruit with me. I have had a head, whole body and cardiac MRI or (A ) I can’t recall. Obviously you want a full range of bloods, Urine, BP done. X- Rays maybe indicated for specific body areas like the shoulder and the hips.

Tell them that you are feeling vulnerable and not taken seriously, do listen carefully to them and decide whether this is the doctor for you.

If possible take a relative or a friend, as you may get flustered as so much rides on this and they can listen without those emotions.

Decide what you want from this appointment and keep the focus there.

Just a few thoughts. Wishing you all the best with this. I hope they are the one Paul!

[Paulx222 in reply to SheffieldJane]

Thank you SJ

Really grateful

[123-go]

Nothing to add to SheffieldJane’s helpful reply but will echo her advice to make a list of everything you want to say: nothing worse than coming away and realising you forgot to mention something. It’s important to mention the toll all this taking-mental as well as physical.

I hope Mr Khan uses ultrasound to aid diagnosis plus MRI to confirm. If you are up to it, have a look at the following link where bursitis involvement in PMR is discussed:

pubmed.ncbi.nlm.nih.gov/113... No pressure-I’m sure you are overloaded with reading.

I wish you the very best with your appointment where I’m sure you’ll get answers.

[Paulx222 in reply to 123-go]

Thank you both so much

[DorsetLady PMRGCAuk volunteer]

For completeness reply to other post copied here-

This from FAQs might give you a bit of guidance

healthunlocked.com/pmrgcauk.....

Hopefully he will ask you what symptoms you have - and explain what he think it is. Just make a list of what’s gone on so you can refer to it if you need to…salient points as a reminder..

Good luck

[Flinders61]

No specific advice regarding questions to ask but reiterate the importance of taking someone with you who can listen & prompt appropriately if needed. I am able to contact my rheumatologist by emailing his practice, this is incredibly helpful as it is common to have clarifying questions following a consultation. Hope all goes well for you.

[Paulx222]

Update:

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

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

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

Have replied on latest post….