RHEUMY APPOINTMENT AT LAST: Hi to everyone and a merry... - NRAS

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RHEUMY APPOINTMENT AT LAST

Titchyj profile image
24 Replies

Hi to everyone and a merry Christmas.

I have my Rheumy appontment at last, it is on Monday. Do you have any tips as to what to expect and what sort of tests will I have, also what questions to ask. I am in severe pain in hands and fingers, and feet, also suffer with Fibro and have lumps all over body, but the ones that hurt the most are over my ribs and hips. Any help would be very much appreciated.

Thanks

Titchyj

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Titchyj profile image
Titchyj
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24 Replies

Sit quietly and think about all that you would like to say regarding how you are feeling, list all the areas that are painful and the lumps and bumps, however small and insignificance you think they are. Place on your list anything that you think is part of your RA not matter how small. Make time to be at the hospital for a while in case you have any x-rays and bloods done that day. If you do that sometimes you can go back to the consultant that day, it's happened to me, and the results are all there. Other hospitals do have their own regime though.

Good Luck. xx

Titchyj profile image
Titchyj in reply to

Hi Georje,

Thanks for your comments I will try and write down things as you suggest, but my hands are very painful today, will see how they are tomorrow.

notts profile image
notts

i am still waiting for my first rheumy appontment .. how long did you after wait ?

help would be very much appreciated from me 2 , because i dont no what questions to ask .

Titchyj profile image
Titchyj in reply to notts

Hi notts,

I have only been waiting for 3 months, but when you are in so much pain you don't want to have to wait at all. Hope yours come through soon, I suppose it depends on where you live and waiting lists etc.,. I will let you all know how I get on.

Titchyj

notts profile image
notts

3 months . only ? i was hoping i would be seen this month .. maybe not !!

im not in much pain . if i keep taking pain killers .

if you let me no how you get on , that will be great , thanks

Titchyj profile image
Titchyj in reply to notts

Will let you as soon as

missmopp profile image
missmopp

merry Christmas to you , georje,x write it down wot you wont to say , as my rhumy is so rude and when i go , i had think wot i wont to say as is just all black and white with him , he cant wait to shove you out the room , good luck with yours, jo x

Titchyj profile image
Titchyj in reply to missmopp

Thank you, will try and get questions down on paper, but in my experience these docs. Don't have the time or patience to read or listen to you. Will have to wait and see what happens on Monday . Has anyone seen Dr Omar El-Gaby at Nevill Hall Hospital in Abergaveny, can't seem to find much about him on net?

Let us know how it goes.. love your dog xx

Titchyj profile image
Titchyj in reply to

Will let you know how I get on. Thanks for your comment about my dog, he is great, but suffers with a bit of arthritis , he is on anti inflamatory meds, but he is 13 years old, so he's not done too bad for his age.

earthwitch profile image
earthwitch

My biggest tip would be to take someone with you to the appointment.

This helps in a number of ways - its another pair of ears to remember what has been said, as you will probably forget a lot. If you talk with the person you take with you in advance you can get them to remind you if you forget to ask about something important. But the biggest reason is that it seems to have a big effect on the doctors and they make a much better effort to explain things properly and to do proper examinations.

Titchyj profile image
Titchyj in reply to earthwitch

Will try and do this, but husband is on the night shift, he will take me to my appointment, but usually has a sleep in the car while I'm in there. See what I can do.

nanypat profile image
nanypat

Titchy- my tip is to take photos of any joints that are inflamed to show the Rhumy on your appt,

take someone with you,make notes,my rhumy was wonderful and explained everything.

i couldnt absorb it so nervey.

love the dog,

pat

Titchyj profile image
Titchyj in reply to nanypat

Thanks for your advice, love your dog too.

Hi - my tip would be to keep an open mind. If you go with expectations of a diagnosis then it will be even harder if you are left in limbo as I was for a while. None of these inflammatory arthritis conditions are usually that easy to diagnose unless you have very clear positives in your blood for Rheumatoid Factor, Inflammation (ESR and CRP) and the anti-CCP test. If you have still to get all these tests taken then it might take a while for them to come back. They like to make as sure as possible that you have this condition before they put you on any DMARDs because they are potentially toxic and you wouldn't want to take them unless you really had to.

Rheumatologists vary so much in their personalities and approaches to patients that no one can really advise you at this stage - but just to warn you that nothing is usually quick in this area of medicine. However steroid injections can be done and usually work pretty fast so that's one option you might be given to tide you over.

My husband works nightshifts too and I have never yet taken him with me for that reason - the room is too small anyway. I asked my GP whether I should bring a friend with me and he advised me not to because he said it might change the dynamic between me and the doctor. I did record my consultations on my iphone though - which has proved really useful because I only see him every 8 months to a year so it helps to recap sometimes when I've forgotten about stuff he's said.

3 months isn't long to wait at all. I waited four months and then another four after being found "inconclusive" - so altogether about 9 months until I started medicines - and they almost always take a few months or more to start working as well. Good luck and let us know how you get on. TTx

Titchyj profile image
Titchyj in reply to

Hi TildaT, I had these tests back in May and they came back clear. Been suffering since, GP prescribed Naproxen, but only short term due to having asthma. Take loads of other meds. so not sure what will be suitable for me to take, cannot tolerate strong pain meds., take 8 paracetamol a day, but don't touch the surface of pain. Will let you know how I get on.

Hi Titch. I too can't tolerate NSAIDs or pain meds for long term use but now I rarely need them. Even today when I'm feeling quite poorly I won't take anything except for an amitriptyline later on. The drugs for RA are quite powerful and it might be a good idea to read up on them all now before you see the consultant in case he or she gives you options. The sooner you can start on them the more likely they are to be effective though so worth checking out I would say.

Neverwell profile image
Neverwell

If you can take someone with you i was all over the place on my first one but my hubby remembered more that me good luck karenxxx

warthog100 profile image
warthog100

My first appointment was the more thorough appointment the 2nd when diagnosis confirmed was much quicker had another steroid inj now waiting for meds to kick in good luck and hope all goes well

Titchyj profile image
Titchyj in reply to warthog100

Hi warthog100, I am hoping they will give me something for the hands as they seem to be the most painful at the moment, feet too. Will let you all know how I get on.

binlid profile image
binlid

i had a private diagnosis sept then reffered to nhs had app on wed the lady was so dam rude that i had to go to my docs on thurs morning and report her i was disressed rushed me out of room didnt like it cos i had private diagnosis said she didnt have tests fron doc doc said she had yes i agree take someone with you .and take notes she wasnt interested in what i had to say got to go back 2nd jan hope she in better frame of mind im sure you will be fine they cant all be bad remember its yor health hun dont be bullied good luck.

shirlthegirl profile image
shirlthegirl

Hi, I think everyone has given you great advice, But also remember to list all the drugs you are taking, also any appointments you have had due to this decease, Also any history of this in your family eg meds they are on, and of course if possible take someone which you, if you don't have someone, make sure you take notes as there is a lot of information to take in, I had a great experience , But i know that some people on here were not as lucky,

So good luck and let us know how you get on.

Shirl xx

jazzi profile image
jazzi

I have been seeing my Rheumy dept for 6 yrs . Have always found them helpfull ,one sugestion I would make is to always make a note of any tests you have done for future ref. I always keep a copy of any hospital letters I receive as sometimes these get lost between depts and it is difficult to remember which doctors uyou have seen. Hope everything goes well.

Titchyj profile image
Titchyj

Thank you all, I will take your advice and hope all goes well, will let you all know how I get

on.

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