Does your doctor remember who you are ?
Posted , 14 users are following.
I don’t mean just your name, but do they know exactly what has been going on in your ‘medical’ life since they last saw you ? Every appointment that you have (three to six months ?), they have several hundred other patients between your visits, all with different problems, and all changing their conditions and problems between these widely spaced visits. I don’t think they really remember in detail what is going on, since they first saw you, in precise adequate detail to do the very best for each patient.
Another example is your yearly physical (if you happen to have a yearly physical) – does your doctor do much more than the regular check and look at last year’s results unless you have a real medical problem they are regularly dealing with ? Usually that’s all they do, but they don’t look back to see how this is related to the last 10+ years which would show trends for future potential medical issues.
I never realized this until I ‘got’ this long term disease – PMR – all the other things I previously ‘got’ were kinda’ quickies, one shot issues, in relation to the years of medical need for PMR.
I honestly think that if I had not been lucky enough to have discovered and be ‘trained’ by “Patient” and all the great Forum brains, I would not have had the necessary knowledge and multi-person information to deal with PMR and get myself down to the drug (pred) level that I’m at by just going to my medical professionals.
An example that we all know, from the lack of patient information, is the high speed taper that many doctors/rheumatologists propose, because they seem to think that they had better ‘cure’ you right away or you will think they are not competent. So flare after flare is so common due to this attitude, and they often don’t record these in detail, until somehow the very slow taper is identified to be necessary, and how slow should it be ? – and I think that this determination is often via the patient’s information and not the doctor’s research into the patient’s records of the previous 2-3 years. Maybe I’m being a bit ‘tough’ on the docs but I think this is a common discussion point.
Anyway, what I do is to make my own medical history for each doctor in the form of a chart and give them a copy each time I go for an appointment to show what has been happening since I last saw them. It is very beneficial for PMR due to the changes that occur between medication dosage, blood test results and how I am actually feeling on a day to day basis – ache and pain wise.
My rheumatologist really likes it and finds it so much easier to make decisions and potential future medication plans and wants the format to be able use it for other patients that she has to allow her to really understand what has been happening throughout their consultation periods.
Likewise, a couple of other doctors that I go to, my urologist and GP, want the similar charts for the histories I make for the issues that they are dealing with.
Regardless of the way you keep your medical history, I think that it is very beneficial when going to a doctor appointment to have detailed information of your history that shows on one page or so what is going on in your medical life for the reason you are seeing them (including exactly how you have been feeling between appointments) and not to rely on your doctor reading back though years of thick paper files (in some cases electronic these days of computers) – which I’m sure they do not have time to do for each patient.
If anyone wants to see what I do for my PMR chart, send me a personal message and I’ll forward an example to you.
Dave
3 likes, 31 replies
faye______00403 Dave-California
Posted
small notebook in my purse and write down what was done and talked
about at each appt, any change in meds, new meds, results of tests
etc. I even look back and tell my doc when i had a particular test. It's
easiier than him going through a sheaf of paper looking......I do request
copies of blood work, MRI's in case I go to another doc that might need
to see them....
Nowadays you have to be pro-active about your health. hiwever
I am going to have a look at what you do.....
Susanne_M_UK Dave-California
Posted
It is very useful to look back over when tapering.
My new rheumy called me "an expert patient", which I've certainly had to become!
LayneTX Dave-California
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I keep a makeshift calendar, but sometimes not sure what to put on it and hard to anticipate questions they might ask so I can have timescale ready for them. I write my questions down, but very single time I feel so rushed I miss several questions. I so often leave doctors offices still confused and unsure what they told me.
I've wished I could record the conversation!
But yes, going through this PMR I've noticed we must be our own doctors in a way and keep up with our own records!
Also, they don't give me copies of lab results, now I'm learning to ask. I had an MRI a while back, before PMR, they said it looked fine, well, I went to a pain management doctor who somehow had that result and noted some things in my spine.
Same with recent xray saying I have moderate COPD, my primary just said it's nothing to worry about. I do not smoke!!! I never got to talk with a pulmonary doctor. It's crazy, seems we must press issues. I've had to go to the office and insist to see nurse when I had Thrush, verses them scheduling an appointment for me.
My hardest part is knowing what questions to ask them, if I don't ask right questions I still go unknowing...
Even today I asked pharmacist if I should buy a glucose meter since I've SO TIRED and daily now feel like I'm hypoglycemic, she said ask doctor so I can get insurance to pay, but I also had to ask, could this symptom be from Sulfasalazine or Pred, or Thyroid med??? or PMR?? Ha, basically all of the above...
anyway... Still confused.
Ardern Dave-California
Posted
Yes he remeber who I am. I have known my Rheumatologist for seven years before I became his patient. We used to cycle together. I also kept notes I on a daily basis at the begin and now a weekly synopsis and spread sheet of my Meds. With my brian fog at times there is no other my of doing it. I did case is not a typical I have jaw pain for week with vision issues esr and ck where perfectly normal for 2 weeks then I started with temporal head aches again blood normal. It was only in the 3 week that both Doctors started to think that it was Temporal arteritis and was put Preds. I have been seeing him every 3 weeks I could have a beter arrangement.
Anhaga Dave-California
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Susanne_M_UK Anhaga
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artfingers Dave-California
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EileenH Dave-California
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In my experience the ones who don't feel threatened will cooperate with you in all aspects of your care. They seem to be a minority.
julian. EileenH
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I'm lucky enough to be able to go elsewhere when I meet with the barrier of someone who feels threatened. Experience says its not worth persevering.
Dave-California EileenH
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But I guess it depends on your medical system.
The private insurance in the US is expensive but does allow "choice" at the snap of a finger !
Must be the same for you as well in Australia, Julian ? What's it like in Italy Eileen ?
julian. Dave-California
Posted
Beyond GP there's a referral system to "specialists". Recent tests were available but cost me. Initial specialist consultation was Medicare plus. Difficult to choose specialist (eg cardio or orthopod) at short notice. Hospital procedure was covered by my private insurance, some insurance doesn't cover it all, and there are also public hospitals.
EileenH Dave-California
Posted
All GP services are free but until now not particularly extensive. This is about to be changed - for example, INR testing will be done in the practice rather than you attending the local hospital to have blood taken and then going to the GP for the result and any medication adjustment. Not sure what else will be sent to them. If you are referred to hospital you have a small copay - 18 euros for a first consultant appointment, 12 euros for a follow-up. In-patient treatment is free but you get who you get, and follow-up things have a small copay unless the complaint comes under a certain code when everything to do with that illness is free of charge. So you might have an annual "blood draw" where you pay for some of it but not for other things.
I suppose its a bit like Medicare except probably a bit less choice - you go to the most convenient although if you know there is a nice chap at the hospital in the next town you can ask to go there, you pay your travel. All specialists work out of a hospital for this system. The region is small, not much more than half a million people spread over a lot of mountain passes! It is different from the rest of italy - a lot of private doctors of all sorts working in offices as family doctors plus a speciality.
You can choose to go privately and there are insurance policies - and they cover you all over Europe as far as I can gather so some people here will travel to Austria - the border is about an hour away, Innsbruck University hospital an hour and a half - or even Germany. Is it better than Bozen, our local central hospital, which is the same distance? No idea - but they all speak German in Innsbruck, which is not necessarily so in Bozen! But as Julian says - it is a bit difficult finding a private specialist for an emergency!
julian. Dave-California
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Dave-California julian.
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Called in the morning - "you've probably gor PMR - call rheumatologist Dr. F and get an appointment for this week - she'll fix you".
Like you say - Credibility is the criteria.
Then once I found "Patient", educated myself, made charts and 'educated Dr. F a bit - well, all is well !
maid_mariane Dave-California
Posted
As well for me my applications for work disability and conversations and dates.
If i didn't i would be lost. I also keep in my purse a little calendar logging my headaches and pain and what i take.
What can i say, I'm anal
My mom's dr who was the first dr i saw regarding my symptoms since mine was in Europe the other day asked me how i was and gave me advise as to what to do for exercise. I was in his office for my mom. I thought thst was awesome since he was just filling in while my gp was away and started all the testing.
I really belive it all depends on your relationship