hi all, i finally go my app to see romy specilist on the 7th june.nearly 4months after been diagnoed. could anyone tell me whot to ask and say?, whot doas a romy do? (i did look it up on internet but im struggling to keep info in my head). anything else i need to kw. i got a letter the other day,saying thay are going to look into my nodule in the adrenal gland. .thanks.stacey.

16 Replies

  • Hi there, probably you have been sent to a rheumatologist - often referred to as a rheumy.

    I think it is good idea to write a list of the things that have happened to you in short points, your history and symptoms and where you have been in hospital etc, Anything you can remember to take along, to help you on the day, most of us do this. Best of luck. Mary F x

  • thanks mary. thats how u spell it. (

  • Hi.

    I agree with our Mary.


  • Glad you got your referral! Communication is often the ( missing) key to managing our affliction!

  • I would add to that to think about and writedown what you hope to get from the appointment. Information advice help with specific issues. Have a copy for your self and one for the consultant.

  • thanks eveyone i will rite notes and take notes but not sure whot to say or ask.?

  • I might also add if you are shy and don't feel in your comfort zone - would you have a friend that you could take with you that you are comfortable with . it would give you a chance to talk to this person -go over your thoughts and info .- i have done this a couple of times . and i am about as shy and timid as a cobra !!! but sometimes things can progress so fast, it's good to have another set of ears -- and that person i took wrote things down for me as we had covered so much .it was a tremedous help believe me. ---- jet

  • spot on jet.yes im shy and get flustared when speaking to medical ppl. some of them rush u. iv allready booked my mom but her memorie is not that good. thought about buying a small recorder and asking them if i could use it. thanks stacey.

  • First of all I write a Medical CV - this starts with my name, address, telephone number etc. I follow that up with a list of my Allergies in Red. Then I have a heading called Medical Conditions and under that I list each one in order of importance with the name of the Dr treating it along with their contact details.

    I then have another heading called Medical History, and under that in bullet form I do date and then the event that happened starting from as far back as you want and including anything significant or what you think another Dr would want to know about.

    Then I have a heading for Medications, I list all my medications. I keep this document on my computer and update it every so often and take it to every medical appointment as it reminds me of any medications and has the answer to any questions I might be asked - I just hand it over to whoever is asking the questions and it helps as I dont get flustered.

    I also take along any letters that may be relevant from other Dr's. Test results and scans or xrays too. Take with you any info from the HSF website that you think may be helpful. I make a list of any questions I may want to ask with the most important ones at the top in case you run out of time. Types of questions you may want to ask are: How will this condition affect me? What sort of symptoms can I expect? What medications are you going to prescribe? (you may have questions around the specific medications like warfarin dose or being prescribed the brand of Plaquenil rather than a generic).

    If you go on the HSF website and read some of the info it will probably spur you into thinking of questions!

    Good Luck and please keep us updated as to how you got on. x

  • thanks. ur very organized. very good advice,i will do that and go on wedsite. when i get use of bigger screan. (using phone) stacey

  • hay -APS not fab--next time i need some one i'm calling on YOU . It may be a bit of a swim , but i'll swim over and get you, and i have been practicing my swimming . Here in the states they go thru meds 1 st think when you arrive with the nurse , they at that point will ask of any changes - hospitalizations etc.But you still have to get thru with them to the Dc's. Stacey you are right , she is one organized lady - sounds like a plan to me !!

  • I do the same as ABFab and think you can't go wrong with this advice.

    Hope it goes well.


  • Hey Apsnot: You would be in great demand here! Some doctor's office would snap you up in second, particularly research! Your outline is almost an exact replica of the information the nurses would acquire from the patient except with the addition of Current Problem of today: and in there went the specific reason a patient was there that day. The doctor would then read that and dictate during and throghout his examination and the patient would receive a copy of that dictation which should have amounted to a history and physical and investigation of the specific complaint and action plan decided that day. Including new presecreptions, exercises, etc. and outstanding questions and test results. That format tailored to each specialty (tailored questions for urology,cancers, gastrointentional, etc). This Is what most office use here, in one form or another. Putting the contact information is very considerate of you and probably increases and encourages the chances of conferences. Have you ever thought of compiling a Beginners Journal for Newly Diagnosed Huges Syndrome? You could pattent it, Answer the most commonly asked questions, exploit the fact that you have APS but are still constructive and have many to help and much to donate to this world. I think it would be a good challenge you could work on when you chose and when you are able. I'd read it!

    Best to you and hope YOU are feeling a bit better today. This is one slow moving "almost sick". I hope you are doing better than I am, but at least it is 60F today! Almost summer! And flowers are starting to bud through the mud. But.. I was born 04/27/52 and I cannot remember a birthday it did not dump a phenominal amount of snow, wind, sleet and ice and melt off the next day to usher summer in. The seasons are dramatic here, if nothing else. Think about that Journal for beginners in Pain. And don't forget the pattent! I really think you have the talent to do it.



  • Yes - I am going to make her, (APsnotFAB), come to all my appointments and type up the notes! Mary F x

  • Yes, I bet she would enjoy that, Mary! How about it APsnot? I really do think you have the talent to put together a pamphlet, pattent it and make it available to doctors and patients alike.

    Smiles, Canary

  • think its about time there was info at medical place and posters on walls. aps sounds the kind of person for the job. could teach a gp and public a thing or two. x

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