Does your doctor remember who you are ?

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

I don't do charts or spead sheets....not smart enough but I do keep a

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.....

I keep a GCA diary, noting down blood tests, ESR, CRP, Pred dose etc and how I am feeling at different stages. I then do a brief synopsis of the time between last and current visit to rheumatologist and bring this with me (including the actual diary so that I can look up anything else he may ask for).

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!

No! Atleast my Rheumy doesn't!  She said she could refer me to physical therapist, even though we already went that route!  And something else she said made me wonder about her "knowing" me, or rather not.  Seems they just look at numbers/lab results.

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. 

Hi

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.   

Jeez, I thought I was doing well taking in a scrap of paper with notes jotted on it!

:-)

What a great idea!  Better than having them leaf through pages of old notes.  A concise, succinct chart would be just the ticket!  I'll PM you Dave. Love it!

It does depend on the doctor though - I took a diary of how my symptoms responded to 15mg pred for the benefit of the rheumy who was supposedly making a diagnosis. Not exactly exhaustive - it wasn't even read. "Oh yes, very nice..." The GP who read it was convinced.

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.

I keep a binder that has dividers in it for diffetent pmr catagories such as calendars with my daily reductions and info on reduction techniques if a dr or rumi asks ( my GP took copies), lab results etc.

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

I keep charts. A trivial example is my daily weight since I decided to lose weight in May. Same time, same conditions. It can vary by 1.5kg over a couple of days. What I'm interested in is the trend. Rehab didn't see a change as they measured at the beginning and end, 4 weeks apart. I knew that the natural variation masked the on average 1kg I'd lost over the course.

Cholesterol is another conversation with doc. A spot sample gets the comment "cholesterol is high, we must do something". A chart shows me whether its increasing, decreasing, stable, etc.

In my world spot tests for blood pressure have limited value.

Most frustrating. All the numbers are in their computers. Just not designed around managing chronic conditions or prevention.

Of necessity, due to number of patients and time pressure diagnosis and treatment is based on patterns. Hard luck if you don't fit a recognisable pattern. A lot of it seems formula driven rather than data driven.

Not only does the limited time for consultation predicate against good treatment of chronic disease but the tools (systems) available are limiting.

So yes. Charts and diaries.

Interesting consultation with cardio. I'll return for a stress echo test in a year. Interesting was the language - we have a "baseline" from the first test for comparison. Also a discussion about how they manage and reduce the rates of false positives and negatives from stress echo tests. It seems everyone but the GP is slowly becoming "data driven".

the "don't feel threatened" bit is also common beyond the medical profession.

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.

Like Julian, I also don't spend long with a "quack" who feels threatened or who doesn't seem to care.

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 ?

we have Medicare which is universal health care. Some Doctors accept what Medicare pays, others like a bit more. Its a long time since I had to change (about 25 years)  but it depends on availability. Getting an appointment at short notice also depends where one is. I guess I'm lucky there, in some places A&E gets a workout.

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.

I have a degree of choice in my GP but not totally free  - but then, I live in a village and when I first moved here there was one GP who was overfull but a new one had just started and I saw her a few times as a "tourist" with my UK cover within the EU. Then when we moved here "properly" we registered with her without thinking about it. Then she was having problems increasing the number of patients - many women wanted to move to her from the other (male) GP but he wasn't playing ball. She moved to a new clinic in town, expecting us all to move with her - but different district, not allowed. We were given the grand choice of one 6km away and one 12km away who had spaces! Now they have put another GP in our village - on the doorstep but I'd have to "train" her! I'm staying where I am - I drive and its no big deal combining a shopping expedition with a visit to the GP and she is rheumatology trained which is very ueful. Of course, at some point it may be decided if the nearest GP has a space you have to go to them.

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!

I think it is a generational thing - they got all this magic data and are taught how they should understand it rather than the clinical skills to interpet it relating to THIS patient themselves. My GP is very good about that - she won't jump on the bandwagon of "Oh, that's out of range, panic panic, panic". If it is something that can vary she repeats it to see what trend there is. I find that a lot of men are fixated on the numbers, women often are less so. Maybe it depends on the speciality though. Claudia (GP) knows that patients with arthritis and rheumatism vary a lot, blood tests are really not that useful for monitoring the course of the disease once you have a diagnosis. Unlike kidney disease or BP and stuff. 

Funnily enough, I have found the (real) cardio people I have seen very laid back - while the physicians who happen to cover cardiology when their patient turns up with it in hospital are less so. That happens a fair bit because there is a shortgage of specialist cardiologists locally and you can't always go to Bozen, it isn't practical for a minor thing. But on the whole it works - and I haven't yet had the sort of poor diagnositics I met in the UK. I'm also fortunate in having a good paramedical background so I can work things out for myself a lot of the time. Emergencies are different though.

Dave, what is your current pred level?

I recently changed my nickname from CC24356 to the current one you see now since 75% of the individuals with our condition are female. I keep an excel spreadsheet with the following info and yes, I do create line charts of the data. I take my vitals every morning. My experience with my Rumatoligist (40 yrs with MAYO clinic experience) is the Drs. Initial advice works for the majority of the people they treat and when it does not seem to fit my problems, I go to the Internet and then ask specific questions to Dr.

DATE    SYS    DIA    BPM    WGT    PRED    BMI    EXER    COMMENTS                                         

my real cardio is really laid back!

I suspect also that acute stuff doesn't have a long time frame and shows up well with spot data - its pretty obvious from one data point that something is wrong. With chronic stuff its long time frame with slow trends or instability which makes plotting charts more worthwhile and useful. Industrial style quality control charts, with control limits, work for me. Last night's fish and chips didn't show up as anything unusual on my daily weight chart.

The medical system seems to work on "specifications" and individual samples. So the blood report from the path lab has min and max alongside each result. Height/weight has a min max. After years of industry I think in terms of variation and standard deviations and run charts and trends. Bah humbug.

In my limited view the increasing incidence of chronic in the population and a required shift from "breakdown" to "preventive" medicine requires a change in the approach to individual statistics. A change in the tools.

I think it unreasonable to expect a GP to remember everyone and their problems; however, a good GP should, before calling you in, peruse your file first to jog his memory, so, not too many good GPs out there! I've only ever had one GP that did that. I found that tended to raise my confidence level.

Hi Lee,

After almost 2 years I am tapered down to 4mg of prednisone. I also take methotrexate that does seemed to have helped.

it's good to hear from another spreadsheet person - I think that once the relevant data has been shown to a medical professional, they do become more concerned that they have been doing the correct scope of treatment, not only because it is of interest but they realize that the patient is closely watching them and may actually understand the disease that they are being treated for. As I mentioned before, three of my doctors (internist, urologist and rheumatologist) all sit and review the charts after I give them at the begining of an appointment and then they go into significant discussion and ask many questions. As you reference above, your data lines appear to refer to all the relevant info necessary for the particular doctor you are seeing - this is what I do and have a chart or two for each doctor.

I think that I now get the best response from doctors since using charts etc. than I have had all my life.

Have a fun holiday season and make lots of charts !

Dave