First rheumatologist appt. : I made a list of my... - LUPUS UK

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First rheumatologist appt.


I made a list of my symptoms. Was wondering what else I should take with me on first visit. I am going to bring my current bloodwork. Any other suggestions?

30 Replies

If you haven't already done so, I'd categorise the symptoms into groups (e.g everything to do with joints in one category, everything to do with skin in another, and so on) - this will make the list appear smaller and more likely to be paid attention to by the rheumatologist.

The symptoms should also have an indication against them as to when they first occurred, are they recurrent, continuous, or one off, give intensity grade to each, whether you have noticed any trigger connected to it, whether they respond to any medication etc.

But otherwise you've got everything (unless you've also had X-rays or scans, you need to take them with you too).

Good luck and let us know how it went.

Natura in reply to Purpletop

Thanks purpletop......good idea...I was making a list all over the body...better to catagorize..I do have scans and stuff..thanks for advice..

Betty1984 in reply to Natura

I have my first rheumy to end of the month. I've made a diary of each day, medical history. Should I get the blood results of my gp or will they be in the letter sent to rheumy x

misty14 in reply to Betty1984

Hi Betty

Your blood results should be in the letter sent to your Rheumy but try to get them in case there not!. Hope your appt goes well and let us know how you get on.X

Hi natura, looks like you have everything you need, one thing i could say is, when i had my first app i was a bag of nerves lol, i expected to much i think, i thought in my head maybe this person is going to work a mirical..know whats wrong and give me a magic pill and all will be well..As we all know lupus is not like that, you cant put a sticky plaster on it and tomorrow you will be tip really....know that its a long road and things take ages its a tail of two halfs,, now under a rhumy good news, seeing the best person, but things and medication treating lupus takes forever....with this in mind you wont go of luck at your app, let us know how it went x it took 10 years to find i had lupu, and its been a long road since then, the road years on is still long and to bumpy for my liking lol.....but least the backpack has got a little bit lighter knowing whats wrong, is a weight off...good luck.

Natura in reply to willowwag

Thanks willowag.... I think I really want to hear that I will be sister said to me the other day while she was visiting from the Netherlands (where she has been living for 15 yrs) seem to know a lot of sick people....I thought about it, and wonder why? Too much stress in our lives? I hope I can get some answers and positive talk. I am anxious. Sometimes drs can be defensive when you come into their office prepared. Some not. I hope he is open and listens.

Cann in reply to Natura

Certainly too much stress on our bodies. The human race is killing itself!

As well as the important stuff already mentioned, I suggest the following (may seem like over-kill, but this system has stood me in good stead...especially cause letters of referral often are hasty & partial...but also this system gives me good templates for future appt notes prep: especially helpful when am feeling too poorly/brain fogged to flippin recall how to prep notes!)

-always start your notes the way a consultant begins a clinic report:

Name, date of birth, address

Date of consultation, time, hospital, clinic, name of consultant

List of Rx you have on repeat prescription

List of diagnosed conditions currently in treatment

(These lists help your consultant to quickly scan your current treatment status, rather than having to take the time to hunt details out of your longer organ by organ (the skin is an organ, haha) listing)

Also bring along:

-any printed photos of visual symptoms you've got, labelled with name/date

-A list of immediate family members' diagnosed medical conditions

-a list of all the add ons you're bring to the consultation (just as an aide be specific: which X-rays, which photos, which test results)

-a list of questions

I wouldn't rely on your letter of referral to have included test results etc.....over the years, on both sides of the Atlantic, my family & I have turned up at consultations only to discover important relevant data had not been sent in time

Do make a neat summary sheet of info that you can leave with the consultant

It's likely your multi system condition will lead to multiple clinic appts over many years. The more consistently you organise your appt notes, the easier it will be to categorise & maintain your filing system

You probably should bring a fresh morning urine sample too (in the uk we need this)

If you've got sicca/sjogrens symptoms, bring a bottle of water

Good luck, take care

Natura in reply to Barnclown

Thank you Barnclown....writing up now...

Barnclown in reply to Natura

Take heart: you're going to be well prepared!

One other suggestion:

When you meet your consultant, try to smile a bit, look him/her in the eyes and say, "hello, it's so good to meet you, how are you today?"

Oddly enough, more often than not, I've found that this sort of greeting so surprises them, that suddenly they seem to actually wake up & pay extra good attention in the consultation

Hope you'll let us know how you get on


Natura in reply to Barnclown

Barnclown....that's funny....i am going to try that...

Hi write down when you first started to get any symptoms at all even if you think they may be unrelated like bruising, increase in headaches, sore eyes, foggy brain feeling cold anything. Bloods, x-rays, ECG's, blood pressure readings if you've been doing those, scans in fact anything to do with your health. It's sounds like you pretty much have most of what you need!

Natura in reply to Larrylad123

Good point....

A list of your questions most importantly. Photos of any rashes. A relative/friend to come in with you and remember all the stuff the rheumatologist says that you will otherwise forget.

Natura in reply to SarahHeney

I don't have a friend or family member that would go with me. I will try to take notes

I just took a list of symptoms, mainly because I was very nervous and have a tendency to clam up when I see the white coat brigade. The doctor I saw was very grateful for it :)

My first appointment my specialist was running 90 minutes late! He was not at all interested in my list of symptoms. I had to strip to my under garments while he examined me then he sent me for x-rays. After the results of those he discharged me!

My GP and the pain clinic and dermatologist diagnosed me and those are the people I see now.

I really hope your doctor is more understanding than mine was. I appreciate the NHS are under pressure. If I knew how I was going to be treated I would have borrowed the money and gone private.

The specialists and GP I see now on a regular basis I can't fault, they are brilliant with my care.

Good luck with your appointment and best wishes.

Natura in reply to lol-lou

Lol-Lou... I am a little worried about this as it took 2 months. To get this appt. always rushing and not stopping to listen. I hope this doesn't happen

lol-lou in reply to Natura

My chap I saw was so arrogant, I expect he was having a bad day or not in the know about lupus. My problem is he was flicking through my large hospital records and saw I was on anti-depressants and everything I said he just replied with' are you sure it's not in your head?' I did complain about him but was told perhaps I had taken things the wrong way!

Not everyone in the NHS is like that. I hope I have not put you off.

It's a good idea to keep a record of every symptom you get. I have a special diary for this to record everything even including the weather that day which the specialists find useful as well as a photo album dated of just what my skin looks like during flare ups which all the medical staff find very useful. This helps with medication etc.

You are very organised by the sounds of it, I have had to learn this as I have gone on throughout the years of treatment.

Please do not worry about your appointment. If possible take a friend or relative as this helps a lot. I really do wish you well.

Oh LupusUK are a good organisation to join with advice lines and resources to read.

Hi there

Everyone has already given you good advice. What is evident is that people have had varying experience with their first rheumatology visit.

I was lucky that my rheumatologist is great and spends as long as each patient needs, even if that means running late. But realistically some doctors are pushed for time and want to cover as much as they can within the allotted appointment slot.

With that in mind, i would prioritise what you want to say to ensure that you get the opportunity to tell your doctor what you consider to be the most troublesome or important symptoms, just in case you are stopped short. When you are describing your symptoms it might be worth also quantifying how the symptoms impact you, for example the pain in your hands stops you from opening jars, or the fatigue you have is like jet lag and stops you socialising as much as you used to. However it impacts on your life and day-to-day activities.

Bringing someone with you for your first visit is an excellent idea as there is a lot to take in on your first visit.

Good luck.

Lupylass....good points .....I was trying to write my most upsetting experiences, and I forget which ones bother me the most until I am going through it..ha! I do have a notebook of memos...I will go through before appt...thanks

I was very lucky that in my first appointment with a Rheumi it was a referral by my GP. The Rheumi asked me questions, examined me, did lots of tests and said come back in two weeks and we will talk when all results are in. I had heard of Lupus but knew very little about it and wasn't on my radar. That was my first Rheumi and she was very nice, the next one was a B with an itch as they say, I left her office with both of us in agreement that we did not want to meet again. Her problem was that I told her I had Lupus and was being treated but were new in town and needed new doctor. She said she diagnoses her patients, didn't like me telling her how I felt, could not see any rash (had been on Prednisone for 4 months to get rid of it) would do blood work even though it would be negative because I just finished Prednisone, then when it was she said there was nothing wrong with me. I would suggest Natura that you give this new Doctor a chance to ask the right questions before you start giving all your symptoms. If things are going nicely then offer what you have for his/her records that he can review later, not while you are sitting there using up your appointment. Maybe they get put off by people coming in to tell them what they have, I know mine did. Mostly, don't be nervous, you are a grown woman and can handle this just fine - they are not in charge, you are.

Natura in reply to Chapter

Chapter....I think I agree with you. I know my body well, and other doctors don't like me telling them what I have found out. I think they get annoyed that they have medical degrees and many years of experience and i come in thinking I know everything. I think I am going to say little and see what he says. Thanks ..

Natura I think everything has been covered, good group this! I would add that you are honest if asked/as appropriate about the natural remedies you have tried or are using, and your diet as I know from your posts you have tried as many things as you can to help your condition. Sometimes these do interact with certain drugs, just a thought if you have anything new prescribed. Hope it goes well

Natura in reply to tashi

Tashi.... I did make a list of what I am taking naturally. I really do believe a lot of these vitamins and supplements are helping. I have improved a lot with some of my symptoms. I don't have any more indigestion, heartburn, my dizziness is lessened. And my balloon in my rib cage is gone. Plus my intestines are better. I still have some tiredness and muscle weakness. I was told digestive enzymes will save my body energy. I think my own R & D on myself might help others where medication might be lessened through vitamins and supplements. I am still reading a lot of bad side effects of medication. Especially long term. Even my eye doctor when I told him I had lupus asked if I was taking any medication. When I said no, he didn't seem worried about my eyes, and continued his examination. Maybe not today, but someday we could feel better....there is always that possibility. I guess I have faith in my body to heal itself. I am basically seeing a rheumatologist to see if I have sticky blood, and what I might be able to do about osteoarthritis, and if I am getting better, staying the same or getting worse since I was diagnosed. Thank you all for your advice....

Natura, please let us know how you got on at your appointment. Hoping it was positive for you.

On my way shortly... I am very nervous and anxious about how this doctor is going to be towards me. If in fact, he turns out to be a jerk, I am walking out. I am not taking nasty anymore. I had a gastro dr yell at me once. And act like why are you here, you're young. I will try to go in positive!

Well, the doctor was really nice. I like how he talked and listened to me. Although, he said these health sites are not good. He believes because my ANA was positive didn't me that I have lupus. I told him my symptoms and my brother testing positive for anticoagulant lupus, and he sort of blew it off and believes that I have hashimotos because my sister has that. Of course, more blood work was done and I will find out in 6 weeks what the story is. Interesting. I guess I would be happy to not have lupus. I even explained the other day when I was in the sun for a few hours that my shoulders were stinging when I left the beach. He dismissed. I guess I will know more at my next visit. Overall, good visit.

I am so pleased that you are positive after your appointment. What a relief, after worrying so much about it. Just a waiting game now for your results. Best wishes to you for the outcome.

Natura in reply to Wendy39

Thanks Wendy....I am trying to be more positive....I have not been on a good path for a long time. Time to heal, and time to feel good about life!!! Need to change some things, and be happier....find joy ....hope you are well...

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