Hello everyone, I posted my first post a couple of months ago about being referred to rheumatology as I had 2 positive tests. Thank you for welcoming me to the forum.
I was supposed to have my appointment a couple of weeks ago and the hospital cancelled it I’ve now got a new appointment for next Thursday at a different hospital, I’m getting a little bit anxious over it as I don’t know what to expect, can you tell me what is likely to happen at this appointment please? My daughter is coming with me for support and to hopefully remember things that I forget.
I’ve started to write down the joints etc that hurt and any swellings etc , is that a good idea?
Should I write some questions out if so what should I ask ?
My hair has started to fall out over the last 2 months, my hairdresser noticed a small bald patch on the back of my head which wasn’t there on my last appointment with her so it’s appeared since December, Now my hair is falling out, I had my hair done last week and she remarked how thin it had become. Could this be connected to my possible diagnosis of RA, I spoke to my doctor about it and he wasn’t interested and just dismissed it.
Thank you
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Happy321
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Prepare for a bit of waiting around....usually you have weight and blood pressure checked by a nurse first, plus you may be asked to give a urine sample. The rheumatologist may also want to examine you, so have clothes every you can get on and off easily, and best underwear!
Have your list of questions, and any notes about blood tests from your GP in case your file has been lost (it happens...), as well as your notes about symptoms. If you are taking anti-inflammatorys at the moment it's a good idea to stop 3 or 4 days beforehand so the rheumy can see you at your worst.
But most rheumies are nice people, and do realise how awful a possible diagnosis is for us, so do feel you can ask anything.
Often you won't get a diagnosis there and then, but may be sent off for x-rays and blood tests (more waiting around) with a follow up appointment in a few weeks. However if you have obvious pain, inflammation and joint swelling you might be offered a steroid injection to calm things down.
All in all it could well take two hours or so, even the appointment with the reheumy will only be about 15 - 20 Minutes.
First of all, please try not to worry yourself about the appointment. There really is nothing to be afraid of, the rheumy is there to help you and to come to a diagnosis. My first appt was pretty much as helixhelix has said. I was asked lots of questions about my medical history, and my pain and swelling, then had to remove clothes for examination of joints, pressed and squeezed gently! Definitely a good idea to jot down questions as you think of them to ask at the appt. I was given a form by the rheumy to take to my GP to get a set of blood tests done which enabled my rheumy to eventually make her diagnosis (which I was given at my follow up appt a few months later.) In the meantime I was also given an appt to go for an ultrasound scan on my hands and wrists - this also helps to show the rheumy if there is inflammation there and how bad. It is a simple procedure and again, nothing to worry about. No prep or pain involved! x
Hi I was diagnosed 2years ago. I had taken pictures of my feet and hands at there worse. My RA didn’t show up in blood tests. Until Rheumy did an anti ccp blood test that showed very high readings!! Other than that they xrayed feet and hands. Unfortunately I was diagnosed with aggressive sero positive RA. I As for examination I stayed dressed and nurse just checked areas and asked me to do a few things - that I couldn’t do so that shocked me! I was very stiff !! I went into shock and relief that I had a diagnosis x Cried a lot could not believe at 55 yrs old I had gone to no meds to lots of drugs and I won’t lie it has been a scary depressing time . My husband has been marvalous and kept me going x Today I am on meds that work x I feel nearly back to the old me 👏🏻 But do realise if I’m tired I must rest x not as fit as I was but work 4 days a week and walk as much as I can . Just about to start horse riding again - so happy days x Because my amine system is poor I tend to stay clear of friends / family with cold etc . Enjoy your good days and try and have fun 💕 You certainly find out who really cares on your bad days x and the ones that don’t ! But in some ways at least you learn your true friends x Good luck and keep smiling it seems a real challenge at times x But this site is a god send x gentle hugs coming your way 🤗🤗
Thank you for your replies. It does help to know what to expect, I did see a rheumatologist a long time ago as my othopeadic surgeon thought it would be a good idea to get checked over.
I have the full set of blood results that my doctor did in December and he has copied the reports for me which show that I’m RF positive , Ana and Ena positive (I’m not sure if they are all classed as RF positive as they are on different sheets) they make no sense to me but I may take them with me just incase they haven’t got a copy with the referral.
I have already got lumps on some knuckles on my fingers,which have been x-rayed and the joints are clear of osteoarthritis, unfortunately steroid injections don’t work for me I’ve had a few for my OA and they only last a week then the pain returns. My GP has had me on lose dose oral steroids on a 2week on/ 2 week off basis luckily this week and next week are my weeks off but I’m still on the Naproxen, so it’s best I stop taking that on Monday as my appointment is Thursday.
Glad that you have found something that works and helps things reduce.
Thank you for saying how long it could take least I will be prepared for a long time sitting around, it don’t help that I’ve never been to this hospital before as it’s not in my area but comes within the same trust. I couldn’t wait for an appointment at my own hospital as after they cancelled the first one it was a long wait till the next available appointment and I didn’t want to wait that long to see somebody.
Thank you for the replies so far . I will try and jot things down as I think of them otherwise I’m bound to forget what they were by the time I get there next week.
Good idea to take your daughter but make sure you have talked to her before and are truthful as to how your joints are and how you feel (I know we tend to skim over details with our children so as not to worry them). This will enable her to understand more and may be able to ask questions that you have not thought about. The more they can understand the more they can help as it can be a long road to find the best treatment for you as often it is not the first drug you try that will be the 'one' for you - hopefully it will be but with this disease you never know. Try to have a bullet point list so a quick glance to remind yourself of issues you wanted to bring up.
Thank you for your reply, yes we do tend to skim over the worst bits and not tell our children the real truth. She lives at home with me so is more aware than her siblings as to how I am but not the full extent. I have to be careful as if I tell her how Im not feeling to good,she wants to stay at home with me and take the day off work as she don’t want me to be alone all day.
Her grandad has RA, was diagnosed about 16 years ago so has seen him have his flares and how bad his hands are. He was quite lucky in that the methotrexate and sulfasalzine was the first meds that he took and so far they have worked for him.
I may ask her to think of some questions that she may want to ask. I’ve been writing bits down when I think of them. So will hopefully remember to bring them up when at the appointment.
A friend comes with me to my rheumatology appointments and jots down what the doctor or nurse says. I’ve found it incredibly useful to have these bits of paper - sometimes we both forget some important point and it’s great to check back later.
Hello Happy, You have some very good advice already. I just want to emphasise how important a list of questions is. Write down everything, no matter how trivial or silly it might seem. If it pops into your head then it might do so again later to nag you. Get an answer to everything you have written down. All the best and keep in touch.
I agree with the others. I always take a notebook with me with my symptoms, how I’m feeling and any questions I want to ask as well as a section where I keep all my blood test results. I’ve also found they don’t mind if you write things down and work through your list.
When I was seeing an endocrinologist for my thyroid I used to keep a diary with how my body was feeling from day to day - again just a quick note but when I was due to see my endo I used to look through it the night before and see how I really had been feeling. I find it’s very easy to say “Fine” when asked how I’m feeling then remember things once I’ve left the hospital so that worked for me. I tend not to do that with my arthritis though. Probably because I stay the same most of the time and my drugs don’t change.
I also found it best to keep things simple and as brief as possible so I tended to stick to bullet points / headings rather than to write an essay and lose my doctor’s attention.
I always take a bottle of water or buy a coffee and have something good to read and I always expect to have to wait for ages then if I don’t have to wait it’s a pleasant surprise and like someone else said I’ve found all the rheumatologists I’ve seen to be really pleasant and caring people, so good luck.
This was so helpful i have an appointment in just over 3 weeks i'm so scared tbh, i'm 29 and in a hella lot of pain. So i don't have a lot of people to ask with experiance. This forum is helping me out a lot! I hope you get on ok at your appointment Happy321 x
Hello everyone, I thought I would update after my first appointment with the rheumatologist, it’s been a very long and tiring day. Not helped by the fact I had to go to a different hospital and as I don’t drive had to use the bus.
When I arrived at the appointment, I was weighed, urine checked and had blood pressure done. Apparently the blood pressure was on the high side but that’s probably from worrying about the appointment.
The consultant had 2 students with him, he went over what my doctor had said in the referral, but he hadn’t been given my blood test results from the gp. Luckily I had my copy with me so I gave him those which he copied.
They then asked loads of questions before examining me. I definitely have raynauds syndrome as they could see that from my toes and hands and how cold they were.
On examination , they checked everywhere, asked about dislocations, listened to my chest and heart.
He mentioned to one of the students about some crackling in my left lung and mentioned ILD, asked when I had my last chest X-ray done. There was a lot of talking amongst themselves.
After the examination the consultant asked about skin rashes, sunburn , miscarriages and mentioned lupus to the student doctor. From the questions they were asking and what they were saying amongst themselves, I didn’t get the impression that they feel that I have RA, ( my gp thought it was RA due to the tests results.) they never once mentioned RA throughout the appointment, they asked if anyone in my family has autoimmune diseases, which my sister has ulcerative colitis..
I have had my bloods done again today, plus X-rays of my chest , feet and hands. They are sending me appointments for ultrasounds of my heart, hands and feet and I have to go back in 8 weeks.
So I’ve had a full mot, hopefully when I go back they will have all the results back and I will find out what it is that is making me feel this way.
Sometimes it's great having students as the doctors show off and are really, really thorough! Shame they didn't explain more about what they are thinking as 8 weeks is a long time to hang around. Hope the anti-inflammatory and steroids keep things manageable for you until then.
(And thanks for the update, it's nice when we get to hear what's in the next chapter...)
Thank you, think the next instalment will be a long wait. I would have preferred for them to say what they thought it was rather than leave me hanging till my next appointment.
It helps to develop your assertive nature in this world. I find that I've got the best results when I've been politely pushy so that I get my questions answered. They are so busy that it's easy to get swept along and be out the door again before you've had time to think, but do sit tight if you can and hang on to your list of questions.
Thank you, I will hopefully get the chance to ask questions at the next appointment and hopefully they will have a better idea of what’s going on by then.
Hello everyone, just an update to some of my tests that I’ve had done since my appointment with the rheumatologist. I’ve had 2 letters from the consultant regarding a couple of the blood test results. I have a vitamin D deficiency so I’m now on 50,000 units of vit D once a week for 8 weeks and then I will have to take a maintenance dose to keep my levels up and the rheumatologist will assess it regularly. 1 blood test has come back as positive or coeliac disease ( which would explain stomach issues that I’ve had for years) my level on the antibody test was 53, anything over 30 is a strong positive apparently. So I have to get my doctor to refer me to a gastroenterologist.
Ive not had the rest of the blood test results and I’m still waiting for a date for my follow up appointment, I’ve spoken to his secretary and they are overrun at the moment and are organising extra appointment slots so could be a wait till I see him. I asked about the other blood test results and she said the consultant will discuss them with me at my appointment ,they have sent the blood results to my gp.
I’ve had my heart scan the results have been sent to the consultant, yesterday I had the ultrasound test of my hands and feet. I’ve got chronic synovitis in both hands in the middle and bottom knuckles, on my right hand the tendons in my ring and little finger are thickened. Which explains why they are so sore.
My feet have synovitis is some of my toes, with oesteoarthritis and bunions on both big toes.
Hopefully now all the tests have been completed, he will send me an appointment date so that I can find out what’s causing it.
Thank you for reading if you got this far. Have a good day, looks like it’s going to be a sunny day here so I will be sitting in the garden chilling.
I have suffered from Plantar Fascinates in my right foot for the past year and a half. I have tried everything from expensive custom orthotics (hard plastic ) to a Cortizone injection in my heel. Nothing worked until I bought a pair of orthofeet. I still feel slight pain but nothing anywhere NEAR what I used to experience. In other words, the solution was as simple as the shoes I wear orthofeet
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