1st Rheumy Appt Monday - what to expect?

Hi back - thank you SO much for your helpful insights! I've started texting myself questions as they pop up so I'll have them with me at the appt - I can totally see myself forgetting to tell the dr some of my symptoms, too! I'm glad I'm not the only nervous one! Thx again & good luck! xxoo

Leslie makes an important point here, Samantha, when she says she "forgot to say half of my symptoms". 

Your best chance of getting all your questions in is to give the list to your husband who's going to sit in the consulting room with you, and while you listen and talk to the doctor, get your husband to keep track of what's been answered and what has not. 

Discuss it in detail with him ahead of time to make sure he knows as well as you do what you need to say and what to ask.

Otherwise your list won't be of much value to you because you won't have time or space to properly consult it, you'll be too busy being examind and trying to make sense of what the doctor's saying. And it is important for you to not get so overwhelmed or worried about what you've forgotten, you can't listen.

Then make sure you and your hubby go over everything as soon after the appointment as possible so nothing falls between the cracks.

This is a tried and tested system after 11 years of rheumatology appointments and I can say it does actually work.

Good luck!

I've been through this numerous times and found that's the best system that's most likely to work.

This is a great suggestion! Giving the list of questions and symptoms to my husband is a genius idea - and I know he wants to help, so this will be great! I'll make sure we go over it together like you suggested, too! I'm glad to know this has to worked for you! It takes some of the pressure off of me to remember everything - because I know I'm going to be nervous - And I like the suggestion about going over it with him afterwards to make sure we don't forget anything... Thanks for this very practical advice! Hugs to you! ??????

Of course it all depends on your doctor, where you live, your medical history and test findings, but I think generally one's expectations of that first appointment can lead to great disappointment and frustration.

I found I didn't get to say half the things I wanted to say at my first appointment. Not necessarily because I forgot, but because I didn't get the chance.

I was asked a series of pointed questions about specific things. There was no room for a general chat about what was bothering me. It was all about the rheumatologist getting the answers she wanted. No rheumatologist has ever asked me how my symptoms affect my day-to-day life or work.

The rheumatologist has a referral based on a supposition. e.g. Your GP thinks you might have some form of inflammatory arthritis and is asking the rheumatologist to investigate. So the rheumatologist sets about ruling it out, and if they can't rule it out you might end up with a diagnosis.

But what if your symptoms are caused by a neurological problem, for example? The rheumatologist will find no signs of inflammatory arthritis and, based on this, rule it out and tell you there's nothing wrong. Because their job is to look at possible inflammatory arthritis, not the bigger picture. This will be frustrating. You might even end up being diagnosed with fibromyalgia simply because you've been referred to a rheumatologist when you should be seeing a neurologist or someone else entirely. 

Your rheumatologist has their own agenda and it's not necessarily the same as yours. So, don't be afraid to ask for a second opinion. Don't be afraid to go back to your GP if you're not happy with the care you're getting. Don't be afraid to ask for something to help the pain (something I forgot to do).

My rheumatologist made up her mind on my first appointment that I did not have inflammatory arthritis, before she'd run any tests. From then on, she saw what she wanted to see, heard what she wanted to hear. She was wrong.

Good luck.

You're absolutely right... I wasn't impressed with the dr I saw... She asked me questions and ordered further blood tests... According to her, although my RF levels aren't normal, my pain in my wrists, feet, hips, and shoulders could be 'bursitis' - it was disappointing... Now we wait for the blood test results... She seemed to be in a hurry, and I felt like it was kind of a waste of time. Oh well! Thanks for your insight with this!

I wonder if you had the same Rheumie as my sister....mind made up before she went in....and not able to ask questions...told " be quiet and listen to me!" we wern`t having that, and have changed from her....when you feel ill and in lots of pain, that`s the last thing you want to be dealing with...what a shame these Rheumies exist!  (we are in Norfolk).....

Hi Leicestersar you are quite right in what you say. I was referred to a Rheumatologist who said he thought I had fibromyalgia and then because I had inflammation he changed it to polymyalgia rheumatica. I then saw a neurologist for pain in my neck and then a gastrologist for back pain, all things came back negative until I thought I was going mad. I then left work because I was feeling so ill and moved to the coast to retire and saw a young doctor who checked for RA and referred me to the Rheumatologist I have now. All of this has taken over 5 years. It is good to get a specialist who listens and is approachable and we shouldn't be afraid to keep digging for answers if we're unsure. I can ring her whenever and I have skype appointments (which cost me nothing!) with her inbetween face to face appointments (it takes 5 hours to get there).

I'm in Georgia - but it sounds like your sister's doctor could be related to mine :0) I'm not going back to her - it's just frustrating because I had such high hopes of that first visit. Oh well! ??????

I'm so sorry you've been through so much to find the right doctor! I'm finding out that it can definitely be frustrating when you're in pain and the doctor doesn't really let you talk, then says it must be something else - it totally makes you feel like you're going crazy... I'm glad you finally found someone to help you! Big hugs! ??????

Thank you for the good wishes! I definitely need to write more down because I know I'll be nervous & forget most of what I want to say! I'm going to look up the definition of 'flares' now so I'll be ready - it's all SO new right now... good grief! Thanks for the great advice & hugs to you! xxoo

Thank you for letting me know! I think they might xray my feet, too... or maybe they won't... it's a crazy feeling not knowing what to expect! But you all are so kind to share your experiences with me - thank you SO much! Take care! xxoo