Been cogitating about visit to first Lupus specialist.My symptoms, as you know, have been ignored for some time though I have been diagnosed with Lupus. My quandry is this... should I write ahead of time, listing all my symptoms to give him time to think and prioritise the symptoms (eg Sjogrens) and tests required and treatments, or will there be time to go through it all first time?
Sorry. Worrier. Too much time to think. I have written out a long list. I will make sure I have it memorised so nothing is missed on the day.
Help!?
As always. Thanks for your kind consideration of a mithering woman's ramblings. I am trying to make the most of this opportunity and keep my hopes in check.
Much love
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Written by
Footygirl
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I think it can be helpful to have some lists or notes to take in to your appointment rather than relying on memory. A lot can happen during an appointment so it is easy for things to slip your mind which you may then regret later.
You don't necessarily need to bombard the consultant with information, but having it available in case they would like it, or for your own reference if you get asked, is going to be helpful.
I'm sure the rest of the group here will give you some great advice from their personal experiences.
Hello ⚽️ footy: great question! Am looking forward to following this discussion!
My initial appt at lupus clinic lasted an amazing 2 hours...including fully detailed medical history + physical examination...treatment was immediately prescribed the same day on that basis alone, although blood samples were taken too. So, I was glad I came fully prepped to answer all the questions (dates, symptom onset & severity, diagnoses, treatments, family history etc etc).
For what it's worth: so far consultants seem to have wanted most to get a first hand impression of me as a patient, rather than to read something I'd written beforehand. So far, in my case, the system seems to have been relying on other medics to give relevant details in letters of referral...which I then add to in person during the consultation. I've offered consultants a copy of the notes I've brought to consultations, but they seldom actually want a copy
Here is a link to the best advice I've found online re preppng for consultations:
Mine took 30 mins but was thorough and to the point and came out of it with a plan and a prescription.
I wouldn't send anything in advance because no one will read it until 3 seconds before coming to get you and then you might as well start all over. Thats been my experience so far and I've seen many consultants, mainly privately. Maybe NHS is different.
But if it will help you get your thoughts together, by all means summarise everything in bullet list and send it through, just be prepared to repeat it all again when you get in.
Thanks Purpletop, another Guru. D'yknow, that sounds right! Three seconds before. Hmm. Reality. Hmm. That stopped my gallop. In a good way. So more votes for brief notes, no advance notice. Memory aids.
Agreed! And my lupus specialist nurse always suggests we prioritise 3 things for each appt: 3 problems, 3 questions, whatever...3 BIG things are easier to remember during the strain & pressure of enduring a consultation
Hello. I have done this and thought about it a lot. I am definitely one to keep a record of my symptoms before and after diagnosis etc. When I had my first appointment with a rheumy (Nov 2013) I went in with my brief hand written notes. But I find I get side tracked during these appointments and do not always check back at my list to make sure I have had all of the points raised or discussed! So notes at the appointment are not always good for me. Although I still always do it. So when I changed GP's surgery in September 2014 I sent them some info re symptoms at diagnosis (diagnosis for me was at the time of my 2nd big flare, in hindsight) and my symptoms since then, which are ongoing. I have also done it recently for a new Dermy. I have sent him my brief notes for consideration along with my skin biopsy. The first I had met him he carried out my biopsy and he asked if I would like to go onto his list permanently and I said yes - as he seemed to have knowledge of lupus - which in my area of South West Wales seems to be a rarity. I might be being unnecessarily harsh there, but that is how it feels sometimes. Anyway, I haven't seen him yet - follow up for biopsy results are 19th April - so I can ask him then if my notes helped or not. To be honest, I am a record keeper and I have trouble remembering everything at the appointments. I hope these notes do not offend the medics or make them think badly of me - I am simply a 41 year old mum who wants the best help she can get, for her and her family's sake. I hope they see it that way too. My first private appointment that ked to me getting the prescription for hydroxy in my hand was 30 mins max, but the NHS one, 4 months later was about the same - but she was more thorough = in that she sent me for loads of xrays and tests to check for systemic involvement - ECGs, lung function tests, xrays of hands and feet and chest etc etc. At my NHS appointments since I usually get weighed before the appointment and asked for a urine sample, then spend about 20 mins with the Rheumy and then have the bloods taken that she has requested. Oh and by the way - my lists for my specilaists are, one page A4 bullet points on my symptoms before diagnosis and leading to it and then one page A4 since diagnosis. I figure that's enough for them to take in and then they can ask for details when they see you if they think it is relevant. I hope this has helped. I have rambled too...............................Good luck. x
Again, great answers. Noted, note form. 30 mins but lots of tests etc which is what I am after to verify my symptoms and get diagnosis and treatment. Simple! Huh? Great reply. Food for thought.
You ramble? With all that information? Rambo more like it!
⚽️PS I always take photo prints of visible symptoms to my appts. At my first lupus clinic appt I brought along approx 30 photo prints...probably one reason why that appt was so long...my consultant numbers & logs all the photos I hand over. The clinic always tells me they are VVV glad to have my photos.🤗🍀
Me as well! You can't really argue with an image can you? I still use them to this day. Soooooo helpful and the docs actually seem to respond positively to it.
Keeping track of your symptoms and providing them to your provider is always a good idea. Not sure about the prioritization, tests, etc. If you mean that you want to provide that to him/her as well, I wouldn't prioritize so much as get them compiled and provide them ahead of time. Docs don't mind prepared patients, but having many a candid convo with them they process info in their own way and don't like being overloaded with information before they have a chance to ask their questions.
Speaking of questions, if you have anything specific you want to ask, write that down and bring it with you.
In the meantime, maybe start to journal or diary your health experiences? t can all feel like a tornado in your head, so it might help to jot it down even if you don't give it to anyone. And, who knows, a year from now you might look back and find an important piece of info or reflection!
Personally, about 4 years ago I just randomly started making videos of me talking to me about what I was going through. I find them occasionally and am blown away by where I was then, where I am now and what it was like to get here. My favorites are of me talking to myself while taking walks in public. Always good to look like the crazy lady on the block LOL.
Forgot the other part of the question. My 1st appts ranged, but they were never less than 45 min for the initial. The doc who finally got it all sorted did three visits, 50 minutes each, two weeks apart. I know that's not common, but what a brilliant strategy. Gave us both time to share, reflect, think and come up with answers and an approach.
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