Good luck Midge. I'm sure that many other members of this community will share some great advice with you. I would suggest having a list of key symptoms that you experience and writing down up to three main questions that you would like answered by the end of the appointment. Writing stuff down can be very helpful because otherwise it can be easy to forget things when you are anxious and also trying to take in lots of new information. We have a booklet called, 'A short guide to lupus and visiting your doctor' which you may want to read. It can be downloaded for free at lupusuk.org.uk/publications/
Good luck Midge, I so understand your nervousness about it. I always feel those visits are a bit like job interviews. So much depends on them listening and engaging and taking us on as a challenge!!
Definitely as Paul suggests , write down the main things. I usually find once I start I relax and remember a lot more automatically without having to read it. But psychologically it does help to have it there.
I actually wrote out quite a long update for my Rheumatologist last time I saw him two weeks ago.
I said ,"I hope you don't mind but I thought I would give you this , as it lets you know where I am now ,after two years of treatment with you."
Then I said tentatively ,you must dread folk giving you lists of symptoms, but he seemed genuinely pleased. He said he liked to be given that ,as he could check it over after the consultation and often things were mentioned in the written account that gave key clues to what was actually going on.
So get fully prepared and I am sure all will go well.
I think as a doctor such as a Rheumatologist ,when everything is extremely complex, they would be interested in all the evidence and history you can tell them.
Will be thinking about you and let us know how you get on.
So pleased to read your seeing a Rheumy next week!. I'm sure the consultation will go well, your GP's referral letter will help start the conversation. You've good advice from the Forum, can only add take any pics of rashes you may have. Good luck and I look forward to hearing how it goes. Will think of you. X
It took me a while to pluck up the courage. A huge part of me wants to figure this thing out mainly so as to be able to manage myself better. I don't necessarily have to have a "label" put on this but I dare say it would help immensely when explaining to friends/family.
In saying this another part of me wants to run away or "let sleeping dogs lie."
More testing, repeating the same story/symptoms to Doctors/Specialists who have if we are lucky merely glanced at our case histories just as we enter the room.
Not to mention in some cases the vulnerability and humiliation we at times endure!
All the replies you have been given are spot on. In addition, I would strongly recommend you take a friends or relative with you as it is all to easy to miss a point being made,, or simply missundestand something. my wife all ways comes with me and her listening skills and common sense are invaluable. Good luck.
I intended to take my husband with me but I was going to speak with the specialist on my own. Now I think not. I does seem much more sensible having more support during the consultation exactly for the reasons in which you have mentioned.
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