Rhematologist suggestions please

clio133

Hi,
I'm new to this forum and new to RA. I havn't actually had an official diagnosis yet - got my first referal to a rhematologist coming up. (They cancelled the first one, which didn't help)
This patient choice thing sounds a really good idea but how do I chose when I hadn't even heard of rhematologists until now? And if I've got to have this for life, would be nice to have someone good!
I live right on the border between gloucestershire, warwickshire and worcester so have quite a choice and would love it if anyone can share any experinece of the rhematologists (good or bad!) around here.
cheers

dreamdaisy

Hi, I can't help with your specific enquiry because I live on the oppposite side of the country but, from my experience, the success one has with a doctor is very much based on whether you fundamentally get on well with each other.

The first rheumatologist I saw at my local hospital was coasting towards retirement and basically told me to go away because I didn't have an inflammatory arthritis. I didn't like him and he didn't like me, that was evident from the word go. The second one lacked any sort of 'bedside manner' but did his best to help matters, but, because I felt he lacked empathy, I switched to another (after listening to patients waiting in reception comparing their doctors). She's been great, she listens, responds and genuinely cares - and more importantly doesn't dismiss my concerns as being trivial (unlike my second one). Then most important thing to consider is distance: I spend a fair amount of time attending appointments and I am blessed in that my hospital is only five minutes up the road. That matters, believe you me that matters.

Your first appointment will be one where the rheumatologist tries to establish what's going on with you. He may ask for more blood tests, maybe an Xray, so this is the time to start keeping a diary about what is happening and when (pain levels, tiredness levels, things that help or make things worse) so that he can have a better all-round picture of you. Please let us know how you get on - and don't be surprised if you come away without a diagnosis - an inflammatory arthritis can be an elusive beast when it comes to labelling. DD

valde

Morning Clio133 - I too am waiting for my first rheumy appointment and have taken notice of suggestions on this forum. I have a little note book and have kept a diary since my GP said blood tests showed Inflammatory RA. Also thinking back to my first cronic flare up which was mid January and making notes. Also writing down questions I will have. They will probably think I am being a pain !!!!!! but I hope to get as much as possible out of my forst appointment.......hope I don't have to wait too long. I am still in pain in my shoulder and hands and am taking Ibroprophen 3 times a day with a stomach protector. As long as I keep moving I am not too bad but when I wake in the morning I am very stiff. I ordered a book from this site which gives exercises for Arth and I do these every morning and also in the afternoon/evening. They definitely help to loosen up the joints and are not to taxing. Hope all goes well with your appointment and I will be interested to know how you get on if you get your appointment before me. Take care...Valde

ichabod6

Come to live on the Fylde coast in Lancashire.
The consultants and the medical services are very
good here.

villier

Hi Clio

Welcome to the forum, it is OA I have but have been sent to a rheumy to check for Sjogrens and what is causing inflammation in my blood, afraid I don't live anywhere near you so can't recomend a doctor, you have had some good advice about your first appointment, if it is possible take someone with you as four ears are better than two, when you are nervous you don't take everything in, I'm sure there must be some people in your vicinity that will be able to help, keep us posted how you go...................tc....................Marie x

barbara12

Hello clio133
And welcome from me
Sorry I cant offer any help has to a good rheumy...but please make sure you take a list of anything that you can think of..ie hair loss rashes..joint pain and swellings...they throw that many question at you it will help to be ready with answers..good luck xx

clio133

Shame you all live so far away!

i ended up going with the one who had the earliest appointment in a reasonably local hospital cos I don't like this hanging around, not knowing and everywhere's a two month waiting list. Plan backfired when it was cancelled with 2 weeks notice cos I'd been referred to the wrong clinic. 24hrs of ranting fearing that I'd have to wait another 2 months. But turned out OK cos I've ended up with an earlier appointment. But in a hospital miles away. But at least it will get the ball rolling.

I'm very interested in the fact that loads of you describe yourself as stiff in the morning. I don't feel stiff. Its more of a case that as soon as I wake up, I move and it feels like something tears or rips and its excrutiatingly painful but in a couple of seconds that wears off and I'm reasonably Ok. Yes, a bit achey in my joints during the day but mostly that's livable with without painkillers (occasionally I get the screaming pain again if I suddenly do something foolish).

Is this just because I'm in the early stages and have being stiff in the morning to look forward to?

Or is that what you call a flare up and I've gone from one flare up in my hands to another in my neck without any respite in between?

All stuff to discuss with doctor I guess. Roll on appointment....

ironic

Hi Clio,
Probably a bit late now but I have just booked two referrals through NHS choose and book website and on there they give reviews and stars given by users.

As for the stiffness in the morning I only ever had it slightly right at the start of my RA, a couple of minutes of a totter, (usually landing in the wardrobe). Although my hands can be pesky in the mornings. RA is sneaky it affects everyone differently; sometimes it’s just one joint at a time and can jump around the body.

Good luck with your appointment, I hope things start to become clearer for you soon.

clio133

I think all referrals now go thru choose and book and yes, I did look at all the info and while I think its a good start, I didn't find it very useful because it only tells you the simplest info about the hospital. nothing about the department or doctor. A hospital could be fabulous in all departments except one and come out as five star. And as what loads of RA people have said to me is that a good relationship with your doctor is key, I was looking for more specific info and choose and book gave me nothing much.

but thanks for trying!

C

frogmorton

Hi clio33

A quick hello from me - sorry I am late on. :oops:

I see rheuamtology in Wolverhampton, but my MIL went to Warwickshire for her hip op (done 3 months to teh day after she saw her GP!) and her bro sees rheumatology there for his RA.

In-case that helps at all

Love

Toni xxx

shandy4greenday

Hi Clio33 I too am quite new to this and have RA and mine only started in September.I have now had 3 visits to the Rheumatology and still ongoing with my first appointment only back in January and my local hospital have been great with me I'm lucky there.I don't often get too stiff when I first wake mine tends to start within the first hour or so after waking,like it has been pointed out everyone is different,also my first appointment I had x-rays and more bloods,I am sure all will go well.

Good Luck Sharon xx

Bioluminescence

I know going to a hospital which has a lot of good ratings for various departments might not seem to relevant and there will always be variation within the hospital. But the GP will normally just refer you to what is closest and it could be you're closest hospital is particularly poor in lots of areas and that might not be a good idea if there is one which is generally better and accessible. I wish I had known I could choose any hospital as now I should be going to a better hospital in London (and a better department I think) for a second opinion than the the one I'm currently at. Some of the websites can help a little but then others simply list the names and that's it.