Erythtromelalgia-Getting Worse: Hi, community. In... - LUPUS UK

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Erythtromelalgia-Getting Worse

skylark15
skylark15

Hi, community.

In response to Coco's post with the new TEA Guidelines, I said I had an appointment to see an NHS consultant in London. Professor Denton has a special interest in Scleroderma, Raynaud's and associated connective tissue disorders.

My appointment is on 19th December and I'd like to prepare an up-to date summary of my medical history, symptoms and meds taken, to take with me. It would need to be as brief as anything associated with the multiple manifestations of autoimmune conditions can be (!)

I'd appreciate any tips from those who have made a summary like this to take with them to a first appointment. Thanks.

3 Replies
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Hi skylark, just finished one for my appt next monday to see specialist in Swindon. I haven't seen her in a year & so I did a page summary for her, a copy of the last appointment letter from rheumy which wasn't very informative, but shows her bad my appointment was & a copy of recent blood tests...

The 1 page summary has my name, address, telephone no. Date of our appt. (Maybe should have added my gp details as she writes to her).

I changed the layout, now I proritise my concerns--

*list a number of my key concerns i.e.neuropathy, pain & or meds etc.

*any symptoms you may want to discuss

*Current medications

*Diagnosises to date - brief medical history & dates relating to the last couple of years.

Saves the doctors writing it & more time to discuss health issues & any examination needed & focuses the mind... I bring a copy so they have at hand & I have copies of everything I send..

Hope this helps.. ML 😊

skylark15
skylark15
in reply to maggielee

Thanks so much, ML, this is exactly the sort of help I need: logical, clear, concise and relevant info. I tend to write much too much, whoever I'm writing to😌.

Tess

Hi dear tess: it’s so great your seeing Prof Denton soon, HURRAH. I’ve learned he is a TOP international expert on this...i am vvvv excited for you...and vvvvv much hope you’ll let us know how this goes

Basically, i’m with maggielee!

eg. V recently i had to prep notes for seeing my long time pain consultant for the first time in several years...in many ways this appt was almost like a new beginning for us, because it’s the first time i’ve needed him re my early onset spine conditions in several years AND it’s the first time i’ve seen him since my trio of primary conditions had been more firmly diagnosed AND since i’ve proven over several years to consistently respond pos to my current daily therapeutic combined therapy treatment plan AND since i’ve had to be on Exclusive Elemental Nutrition with no food by mouth etc. So he needed quite a lot of new details... including updating re my allergic response to contrast agents etc, and updating re which clinics are now leading my care

Luckily immunology had signed me onto my univ. hospital’s Patient Portal Pilot last year, which made prepping for seeing him again SUPER easy...all i had to do was:

Print out a few pages from my Patient Portal profile listings:

- Diagnoses

- Medications

- Allergies

- Most recent Rheumatology report

- Most recent Immunology report

And also from my own records at home I :

- refreshed my memory by reviewing the history of my spine conditions and our work together

- jotted down a few specifics of the evolution of the latest acute manifestations re my spine

Had i been prepping for seeing a new consultant re EM simultaneous with RP, i would also have:

- Gathered together digital & printed photograps of my signs & symptoms

Anyway, our appt went really well...my GP had sent him pages & pages of my details from the surgery system which seemed to completely bewilder him..so i asked if maybe he’d just like to leaf through a few pages from my hospital’s Patient Portal...the poor guy seemed SO HAPPY to look at these instead that i had to chuckle...it felt like i’d thrown him a life-saver ring to a drowning man.

Since then he’s copied me in on his report to my GP (it’s almost perfect (he only mixes up one thing and it’s not directly related to my spine stuff, so i’m giving him 9/10!))

Hope something in there is useful

Am wishing you ALL the best

Have a feeling this is going to be. GRRRRREAT appt

❤️🍀❤️🍀❤️🍀 Coco