First consultant rheumatologist appointment - tomorrow!

[Marzipan3468]

I have waited several months for this appointment since being referred by GP, not as long as I initially thought it would be, so that’s a bonus. I have fibromyalgia but GP queries Lupus, but have had fluctuating blood test results. I agree with GP I seem to have 80% of common symptoms, and other more uncommon symptoms that I can’t really link to any other diagnosis out there.

I have made a list of my symptoms tonight ready for my telephone appointment with the rheumatologist but there are over 40! I know I won’t have time to go through all of these symptoms, I haven’t even told my GP every symptom I have because of the strict 10 min appt time.

I am just wondering if any of you have any advice that can help me vocalise my worries about my health to the consultant tomorrow in the short timeframe I have. I have significant short term memory problems so need to write everything down but I am just worried that even though it’s written down I will forget something really important to say and won’t get another chance to do so.

[LuzyCLL]

Before you go write down a list of the issues. Then go over the list and find the most important items, and take a shorter list to your appointment. If all of your questions are not answered ask if there is a nurse specialist or a social worker that you can talk with. Also ask if you have more questions can you contact the dr via the website. My doctors are pretty good at answering those questions after my visit.

[loopy-lou]

Hi, I totally understand what you are saying. I also feel I have so many symptoms that you never get a chance to express them all. You mention it is a telephone appointment. What I do is email a list of my symptoms to the consultant to read before speaking to me. If you ring the hospital and say you would like to email the consultants secretary they should be able to give you an email address. You will need to add your hospital or NHS number/.name etc. Ask for the phone number too. That way they can read your list in advance. I actually ring the secretary after emailing to ensure my email has arrived and the consultant will get it before a phone appointment. I did this only yesterday! Good Luck

[Turquoise-1]

Hi Marzipan3468,

First question I ask, be it face to face or telephone is, “How long is my appointment for today please?”

You will then be able to say that you have many questions to ask plus a list of symptoms to give and are concerned there will be insufficient time to do so.

I always think, “How can they do their best to help me if they don’t know what I know?”….. Surely giving them as much detail as possible will help them to help me.

LucyCLL & loopy-lou both have excellent suggestions which I have done/do.

I have mixed views about telephone appointments, sometimes they serve a purpose & are beneficial but oftentimes there is nothing like being seen in person as a, (in my opinion), a clinical judgment can be best made by who & what is presented before the medical practitioner.

Maybe following your initial telephone appointment a face to face will be arranged.

Good luck & all the best 🙂

[LuzyCLL]

I usually type a list and give it to my dr at the beginning of my appointment

[KayHimm]

Marzipan- the rheumatologist will direct the interview, so you can be assured they will get the information they need. In your case your GP has specifically expressed concern about the possibility of lupus. That likely means you have had blood work and some signs that point in that direction. Your GP may have put these on a referral or the rheumatologist will have access to your chart.

Just feel free to tell your story. If you are worried about time, you can put general symptoms of fatigue, nausea, light-headedness etc together. Rashes, fever, anemia, joint pain and swelling, chest pain you want to be sure to mention.

Hope that helps.

Kay

[Poshcards]

My rheumy is wonderful, during covid she rang me every three months and we would chat sometimes for an hour xx