Hi all I posted a week or so ago regarding getting referred to rheumatologist and today have had my appointment through for January. I have a few questions if anyone could please help;
What generally goes on at first appointment?
What if anything do I need to take with me?
How many appointments does it usually take to get a firm diagnosis as to what is wrong?
Also the biggest worry is that I will go and they will somehow tell me there is nothing wrong with me. I am 26 and until a month or so ago perfectly healthy. I am worried when I go for my appointment my swelling may have gone down (which it does go up and down day to day and can cometimes be gone for a day at a time) and they will think I am being a hypercondriac and dismiss me and tell me there is nothing wrong.
I realise this is a silly worry but for the past month I have been so poorly up and down some days I can take on the world others I cant move and I worry if they catch me on a good day it will seem there is no reason to look into it any further.
I also worry greatly if I am not taken seriously and it is unfortunately RA (which I believe it is) I will end up with permanent damage to my joints so young and this will affect the rest of my life.
Has anyone been on a “good day” and still got a diagnosis or even further testing and been taken seriously? I would love someone to put my mind at rest.
Many thanks
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Larryrufus
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Hello Larry. Please don't panic. The best thing you could bring to your first appointment is a close friend with a pen & paper. A second pair of ears is a good thing to have because your first visit with a Rheumatologist can be so overwhelming. Just tell the truth when asked a question and remember, You doctor is there to help you & guide you.
There's useful info on the NRAS site about preparing for a first appointment. But to add to the points others have said...
Wear clothes that are easy to get on & off as they may want to examine you thoroughly (and best underwear...)
Write down a timeline of your symptoms, as concise as you can. THat plus photos will help explain.
List the main questions you want to ask, in priority order as may not be time for all.
Make sure you have time in case they send you straight off to x-ray/more bloods.
I can't remember if your GP has already done blood tests that show inflammation and antibodies? If so then you are more likely to be diagnosed quickly. For me she wanted to do more bloods so I got the official diagnosis at the second appointment a couple of weeks later, although at the end of the first appointment she said she was pretty sure it was RA as I had obviously swollen joints etc etc.
In 7 years I have never had my urine tested by the hospital.....only by GP if I had symptoms (unrelated to RA) that warranted it. Interesting that some people do.
But don't worry - good rheumatologists know how variable this disease is, especially at the early stages, so are used to people coming with variable symptoms. Diagnosis is based on several things, not just one..
Hiya Larry. Before you go in for the consultation a nurse will probably weigh & measure you, may check your bp & ask you to do a midstream urine sample. Your Rheumy will perform a full joint examination to determine your DAS 28 score so be prepared for that, you may be asked to remove your clothes so best undies on! If bloods haven't already been done at the hospital he'll probably request those (he probably won't rely on your GP's) & he'll likely ask for X-rays or other imaging to be done. They usually discuss the medications & give you literature on the ones thought best for you.
You can use this time to write down all the things I'm sure you've been thinking, the questions you have and would like answers to. If you're taking any on a regular basis list medications, anything you're allergic to, any conditions you have or have had, any operations or complications you've had. You may be asked if anyone in the family has any autoimmune conditions, you have so ask around, parents, grandparents, siblings, aunts, uncles, ask the ones who have to be specific & add those to your notes. If you feel you need it take a notebook to make notes as you'll be fed information you wouldn't ordinarily come across such as the medication your Rheumy prescribes & how & when to take it, it's better if you write it how you understand it. It will also be useful as you're best not relying on the Rheumy's handwriting if he writes anything down, I'm sure you know all doctors writing is illegible to anyone but themselves!
I was advised by my GP to stop taking the pain relief & anti inflammatory she'd prescribed me a few days prior to my diagnostic appointment to give true blood baselines & imaging results to work out which treatment he chooses or discusses with you to prescribe. When I was diagnosed everything was done on the day so I just had the one appointment though it does vary between hospitals & countries. I was prescribed my meds & started them the following day but be prepared, you may be asked to return to hospital to discuss results before you're given your scripts & start treatment.
A month or so before my diagnostic appointment I was perfectly healthy too so I wouldn't worry that you'll be sent away saying all's well. None of those worries are silly so don't waste time worrying about them! You've been fortunate in getting an appointment through so quickly & the examination, bloods, imaging will prove you're not perfectly healthy & a hypochondriac! It also stands you in good stead as the earlier you're diagnosed the less chance you'll suffer permanent damage, if you respond well to treatment as most do you'll be less likely to need joint replacements in the future as well. We don't see the terrible disabling effects of RD like we did in my Nan's day, she was quite badly affected because there was little but pain relief for her.
Rheumy's hands detect more than you'd think, by palpating your joints he'll feel more than you ever could as he knows what they should or shouldn't feel like. Your explanation of how things have been will be understood as long as you're properly honest & don't try to be brave & underplay how things have been so don't worry about that. Only my feet were affected when I was diagnosed so the rest of my body was fine, I suppose you could say that the rest of my body was having a good day?!
If possible ask someone who knows you well to accompany you, if only for support. It is daunting the first appointment & even if you take notes it is easy to miss something. My husband still comes with me to mine, there's always something crops up he remembers that I'd have missed!
Think I've covered most everything, if there's anything else just ask. I hope you get the answers & treatment you're needing. Let us know how it goes?
My first appointment consisted of me giving him a full description of the pain / swelling I had been experiencing over the past few months. Told him family history of RA (Mother and Grandfather had suffered from it). And a previous blood test had shown positive for Rheumatoid factor. I had made a list of good and bad days before I went. He checked the mobility / pain of affected joints. He sent me for foot, hand and back X-rays and several blood tests. There was no diagnosis as such on the first appointment, it was just information gathering. I went back two weeks later for the results. He showed me the X-rays and pointed out bone spurs and wear of the joints. The results of the blood tests were also shown to me. Diagnosis for me was not RA, thankfully, but OA. So sent away with advice of keeping moving and painkillers if it got bad. That was two years ago and my symptoms have reduced. Don't expect a diagnosis the first visit and write down questions before you go. Take someone with you if you can, they will remember things you may forget. Good Luck.
Firstly ask your GP to either give your,or send the the rheumatologist your latest blood test results....that will move things along a bit.
Secondly when your joints are painful & swollen take a photograph to show the rheumy you are not imagining things.
Then if you have any burning questions you want to ask...write them down...because minds tend to go blank once you get into the rheumy's office!
What you describe is not uncommon & could possibly be something called Palindromic Arthritis...ie it comes & goes. You are in agony for a few days, then you wake up the next morning feeling absulutely fine.
I was diagnosed with PA 18 years ago, so I do know how you are feeling. Two years later I was diagnosed with RA, but often PA just goes away for no reason, so stop getting het up about something you have no control over. In the initial stages I would stay in my PJ's for 3 or 4 days because my arms & shoulders were too painful to move...but here I am as well as I have been since diagnosis..so diagnosis of R.a is not necessarily a life sentence.
If the rheumatologist you see seems to be inferring you are imagining things, mention PA...that might make him think again.
Good Luck with your appointment in January. Diagnosis of all auto immune conditions has improved immeasurably since I was diagnosed in 1999 - so you should get a lot of information at that meeting & hopefully that will put your mind at ease...but don't expect a 100% answer to all your questions in day one.
I've been a chronic pain patient for 13 years and it's these good days that make people think we're hypochondriacs or that we are lying about our conditions. So I do understand your worries about seeing the doctor. I would suggest that you take a few moments and write down some questions you want to ask the doctor. You'll also want to include all of your symptoms. The doctor will most likely want to take some blood and you can't fake the results of a blood test. LOL The doctor may also want to do some x-rays or order some kind of Imaging depending on what some of your symptoms are. I'm sorry that you have to wait so long for your appointment. I'm assuming you live in the UK and I've heard people talk about waiting as much as a year to get in to see a specialist. Here in the US you have to wait quite a while to see some kinds of specialists. For instance I have an allergy test scheduled for March which I made a month ago. I've also had to wait a month to see a gastro doctor. Good luck to you and don't dismiss your conditions. And if this doctor doesn't agree that you're having these symptoms see another doctor. Advocate for yourself because nobody else will.
Hi Larry, I can't add much to the extensive and good advise you have already received, except that if you can, keep a pain, swelling and mood diary between now and your appointment. I kept a simple line graph diary with different colour lines and values between 1 to 10. I did this before and for a year after diagnosis. This helped me to track my treatment progress and I could just put it under the consultant's nose to give him a pretty good idea where I was at. All the very best and maybe it's not RA. I live a pretty good live with RA and there are thousands like me. All the very best. Keep in touch.
Hi Larryrufus please don't worry. The first appointment is really to go through your systoms and to look at general health before the pain started.
For the consultant to have a look at your joints by touching them. This is done to find how many joints are active with RA at present. They will also want to do an exray and bloods.
My joints were so swollen when i made the appointment but, had gone down by appointment date.
Bloods showed no inflammation.
I panicked as I thought I wouldn't be believed. I was told the inflammation doesnt always show up in blood work. My mother and daughter have the same thing.
I was reassured by their kindness and empathy. I left there feeling very hopeful that someone was taking me seriously.
They explained what Rhematology could offer in terms of medication and support. They asked if I would like a steroid injection to calm things down until new medication kicked in. I put on methotrexate straight away.
I keep a diary on pain and fatigue levels. Take pictures of swollen joints if you can and take it with you.
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