Tips for first Rheumy appointment

Ldyalb

I'm seeing the Rheumy for the first time on Friday (finally). I've seen 2 Rheumy's before (Fibro, HMS and RLS) but now I have suspected Psoriatic Arthitis, but without the P, except in my nails. I'm increasingly suspecting it's more likely to be RA as it affects my middle finger knuckles, and the bottom ones, but rarely the top. But I digress - that's the Rheumy's job to decide 8)

I know the drill to a certain extent. I've noted down my various symptoms, taken about 1000 pictures of swellings, general oddities etc which I've condensed down to about 10 I'll try and print to show him/her.

I'm going to push for more info on the differences between HMS and Ehlers Danlos Type 3. My first Rheumy didn't seriously consider that it may be the latter, he said if it was EDS I'd have stretch marks on my back, and a Beighton Score of 9 (mine's 7). I've found out online from other bendy people that that's rubbish. I have a lifelong history of bladder issues which is common with EDS patients as well. So this is my moment to explore that further.

I'm going to show him my joints, explain how my knees are getting bad (having to use my walking stick a lot now, can only shower very occasionally, have to bath instead as can sit down). I've got copies of my last few blood test results. My inflammation markers are slightly elevated, but the test was done in the middle of about 4 days of lesser Arthur; I suspect the results would be different on a bad day! I'm hoping the joints which make a horrible noise when moved will be noisy on the day (I find this scary as both parents have OA, diagnosed at 28 (Mum) and 40 (Dad) and Dad's joints make the same noise. Like me they both have HMS. I'm 24 in 3 weeks, which is the age when Mum first got her symptoms)

I had my RF checked 6 months ago when the symptoms got bad enough to warrant me saying to my then second Rheumy 'let's check this out' and the score was 9. Apparently 10 is the highest of normal. I was much much less affected in November though, and no-one's checked since. No-one's done the xrays and ultrasounds that my last Rheumy requested my GP organise in November. (FYI my last Rheumy discharged me as I no longer live in London where she's based).

My GP's arranged for a blood test on Friday as the Hospital made an error with my last blood test, and forgot to check my calcium :x I know the Rheumy is likely to order more bloods anyway (and if not I'll tell him I want my RF screening) and Xrays.

Luckily my Mum got the day off work so I don't have to faff around for 2 hours on 2 buses, and then having to find the Hospital in a town my Dad and I have never been to before.

Is there anything else anyone can think of to show/tell the Rheumy? The kinds of questions about my Fibro were focused on muscles, so now it's my joints I feel a bit lost.

Is there anything I should be asking them about treatment? I'm going to push for more help aside from meds. My joints are increasingly wobbly. I moved away from London in September, then I generally managed the Tube reasonably well. When I last went a month ago I really really struggled. I could feel my knees sliding about as I used stairs - I'm going to ask about joint supports. I think I'll also ask about crutches as I'm very dyspraxic and struggle to use my left hand one handed, whilst my right holds the stick - at least with crutches you can let go with your hands when getting change for the bus, and not have your support fall down as it's attached to your arm :oops:

stickywicket

It is, understandably, an anxious time for you, Ldyalb, and I can see you will want to ensure you don’t omit anything that could be relevant. However, reading your list, my one piece of advice would be that you don’t become so concerned about saying all you want to say that you forget to listen every bit as carefully. Can you take your Mum in with you as an extra pair of ears?

Ldyalb

Thanks, that's my biggest downfall. I have verbal diarrhoea, but not so good on the listening aspect :oops:

Mum and Dad are both coming with me to the Hospital; not sure if both will come in with me, or just Mum (last Rheumy's office was tiny, 2 chairs, 1 for him, 1 for me - Mum had to sit on the bed). I think both will come in if there's room for them.

I have terrible short term memory issues due to Fibro and Dyspraxia so I always try and take someone with me to make sure we note everything of importance down. I'll make sure I bring some paper and a pen as well so I don't forget to take notes

frogmorton

Me too!

as far as the verbal two--bob-bits go!!!

When l had my back op teh surgeon asked my Mum if l talk in my sleep too :oops:

Paper pen etc all good plans and taking sensible support too

just do a short concise list:

What happend(s0

When - for how long

How bad is pain/stiffness (say out of 10)

What can't you do (drive/sleep etc)

any other random symptoms (rashes etc)

Love and luck

Toni xxx

Ldyalb

Thanks Toni, will compile a list.

I just really wish it was tomorrow now, getting impatient again. I have to go to a different Hospital on Monday morning for a Bladder scan. At 8am So on Tuesday I'll have to queue up early to make an appointment to see my GP to update him on what the Rheumatologist has said.

Our printer's dodgy so going to see if it'll print any of the pictures or not. I've had quite a few rashes, and my Eczema has been playing up since November, same with the Rosacea. So generally been feeling pretty icky. Just hope the Rheumy can give me a provisional diagnosis so I have some idea of the beast I'm fighting and can research away!

xxx

stickywicket

Hope it goes well tomorrow, Ldyalb. My rheumatologist always updates my GP. I don't have to do it myself.

tjt6768

Just wanted to wish you good luck with the appointment

Ldyalb

Thanks folks only 2 more sleeps now and hopefully I'll have some answers!

When I was in London and saw Rheumy number 1 2 years ago my GP asked me to ring him the following day to update (was signed off work sick at the time). It was a good job I did as it took 4 weeks for the Rheumy to update my GP on what had been discussed etc. And he only did so so 'quickly' because he suspected I had Liver Disease (I didn't) and wanted to organise more tests.

I'm expecting that I may not receive a definite diagnosis on Friday as the Rheumy will probably want to do scans/x rays etc. But hopefully either way I can start some treatment. My hands are stiffening and swelling again now. I know I'm in for a bad morning when they start before bed

tjt6768

Hope that you can get a decent night's sleep...
Will report for pocket duties on friday, as long as someone reminds me, lol..
I have a terrible short term memory thingamabob :roll:

Ldyalb

My fingers weren't too bad this morning I think some of my toes don't like me though, sods law :roll:

Organising all my bits and pieces for tomorrow, must remember to take my blood results and the form for the other bloods my GP has requested. I hate knowing I'm going to have blood taken, it's never a problem when it's happening but it still makes me anxious beforhand!

I will let you all know how I get on