First Appointment : Going to see my rhomatologist for... - NRAS

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First Appointment

CTrigss profile image
9 Replies

Going to see my rhomatologist for the first time tomorrow not quite sure what to expect ?

Also I've been told I need a letter for my pip application, not sure what sort of letter doc needs to give me. Been off work over a week now in agony just want the pain to go, each day it's worse in one area and mild in the other it changes day by day !!!

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CTrigss profile image
CTrigss
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9 Replies
Lellymel profile image
Lellymel

Hello, I am not an expert by any means, am sure you will get much better advice than I can provide from the great people on here! My first appointment was great, it was relaxed and I felt in safe hands. I had x rays and also ultra sounds of hands, wrists, knees and feet. I had my medication explained, and then I had a steroid injection (in my backside, which was rather unexpected) which took me from being barely able to dress myself to near normality resumed in a few days, but I have no idea if this is normal (the rapid effect, not the injection site)!! Anyway, just relax and don't worry, take a list of questions written down if you can as my thoughts were foggy at the time to say the least. Best of luck!! X

CTrigss profile image
CTrigss in reply toLellymel

Thank you for that really appreciate it. Carole

Livingston profile image
Livingston

I would also expect them to check height, weight, blood pressure and ask for a urine specimen. They may want to draw some blood, depending on what blood tests your GP has done & how recent these are.

You may be asked to complete a questionnaire on how your disease affects your daily life/sleep etc. My clinic seems to go through phases of using/not using something like this.

I think what you need for PIP is information on how your disease impacts your ability to do daily activities such as washing, dressing, feeding yourself & getting out and about. Assessors also look for an indication of how long-term it is expected to be.

anne999 profile image
anne999

Hi i had my first appt a few weeks ago. I spent a long time with both the dr and then the nurse, had x-rays and blood tests, i also had a steroid injection. i was there for a total of almost 5 hours as had to wait in pathology for bloods. then x-rays and finally pharmacy, it is an emotional day trying to remember everything they tell you, can you take anyone with you? The steroid injection took a few days to kick in but felt so well after a few days.........pack a picnic for the wait. otherwise it can cost quite a bit for the cardboard sandwhiches in the vending machines!!. Hope your appt goes well. x

helixhelix profile image
helixhelix

Yes do write down your questions, and try to note down what they say back to you as its very easy to forget! I know some people has asked whether they can record the conversation on their phone. Some docs are ok about this, others aren't.

As for PIP, unless there are other reasons why you need it, you might find that once you are treated things go back to normal so you don't need it. By the time I was diagnosed I could hardly get out of bed, and now I'm fine.

CTrigss profile image
CTrigss in reply tohelixhelix

Thank you for that it's so promising x

Lizzyroo profile image
Lizzyroo

Hi

Hope it goes well for you.

Take some water with you.

Take pen and paper to make notes.

Think about what you wkuld like to ask.

Do allow loads of time.

I went to xray dept for hands feet and chest xrays. Also ultrasound for hands. Then to have bloods done. I too had a steriod shot in my bottom. Be prepared

to undress down to your undies. The relief 24 hrs later to the steriod shot is wonderful and for me lasted 5 to 6 weeks. The NRAS website has a brilliant section on first consultation. All the very best.

anne999 profile image
anne999

I was also given a lot of literature to bring home and read. xx

Dogrose profile image
Dogrose

I asked my rheumatologist for a PIP support letter and she said the best she could do was send a copy of all the last letters she sent out to me GP, none of which outline any difficulties I'm having. She didn't send me them of course, though I later managed to get them from my Rheumy nurse. My GP flat out refused to give me anything, she said she has been told not too, and from what I have learned from other people this is a general thing all GPs have been advised to do. I also asked one of the occupational therapists and she said she would ask the therapist who saw me to write a report but of course it never materialised. I'm too mentally tired to chase any of this up any more so I'm not bothering to apply for PIP now.

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