Interesting article on lessons learned from Chronic Disease

[PMR2011]

This is a good story and in particular lessons learned by an MD with autoimmune diseases.

blogs.webmd.com/psoriatic-a...

Thought I’d share with the best support group ever!

[fmkkm]

Thanks for sharing this, he perfectly describes health care in the USA post Covid. I have become my own advocate. I research everything, cross check all drug interactions and ask for referrals and 2nd opinions if I feel they are necessary. I open every new prescription bottle and cross check with the previous or go to pill identifier to confirm. I believe in integrative medicine and it is almost impossible to find, so I do it myself.

My previous visit to the rheumatologist is a good example. I asked for adrenal tests because I had been on prednisone for 7 years (why did I have to ask?).I was seeing a physician assistant not a doctor because this is health care now, someone to take your blood pressure and write a prescription! She actually said to me, “that’s not my job.” I told her it was her job, her department was responsible for prescribing the prednisone! Then she said it was too complicated and the results hard to interpret. So, I got a referral to an endocrinologist.

These young ones coming out of medical school right now don’t seem very open to learning outside the book. She said the GCA was over because it only lasts 2 years and we are now treating adrenal fatigue ( this from the woman who said at the last appointment the cortisol testing was too complicated for her, but she darn well knows what the text book says).

I have many more stories, the article resonated with me, thanks for the vent!🤣

[PMRpro Ambassador in reply to fmkkm]

And yet endocrinologists deny there is anything called "adrenal fatigue" because that suggests the adrenals are "tired" whereas the case for us is that their activity is suppressed by the body physiology since there is already more corticosteroid present than is needed naturally.

A friend of ours who teaches physiology at a US medical school told us a few years ago that physiology was no longer being "taught" at his university but now comprised "focus groups" where they "discussed" what was happening, developing their own concepts. It reminded me of a story my husband told me from his uni days. In a maths class the lecturer invited one of the class to write his solution to an equation on the board and then asked the class to vote on whether it was correct. A majority voted for the motion, the solution was correct. The lecturer simply said - well that proves democracy doesn't work in maths!

If they don't know the basic physiology and biochemistry correctly they are going to get all sorts of things wrong.

[fmkkm in reply to PMRpro]

I love the “focus groups” story. I wonder if they also got to discuss their “feelings”, hahaha!

Another interesting thing I just learned about healthcare here in the US. I got an email from Amazon the other day that they were now offering healthcare in the Raleigh/Durham area. It’s mostly by telemedicine with three small Dr. offices in the area. They are teaming up with Duke for specialty care. I use the Duke system and it takes 4-6 months now to schedule a visit for a specialist. Anyway, $145 a year to Amazon to join and of course you need health insurance that they accept. Amazon also offers prescription services. Thought provoking!

[PMRpro Ambassador in reply to fmkkm]

Or to complain that aspects were too "challenging" ...

[yogabonnie]

thanks ! Very interesting. I am so lucky with my doc. And he is only 58. I will have him forever!

[123-go]

Thank you for this eye-opening, eye-watering account.

Many of us here have learned to be our own advocates and question when things don’t feel right. During the past 4+ years I have 1) disagreed with a tapering plan, expressing my concern with reasons and suggested my own which was accepted, 2) refused medication after my own research and 3) asked for a second opinion after a consultation where the doctor totally ignored my issues and ‘diagnosed’ without investigations conditions that I didn’t have. Apart from these relatively small things (compared with what I have just read) I have had confidence in the multi-disciplinary involvement requested by my consultant and have been fortunate in this. In my opinion, the best outcome possible for patients depends on the extent of the medical professional’s dedication to the patient as an individual, willingness to listen and of course his/her expertise. Perhaps the training needs to include modules regarding ‘Being Human’…😏

A reminder to anyone who is reluctant to question the notion of ‘doctor knows best’, please think again if your gut is telling you something feels wrong and ask to have things explained, read reliable sources of information and ask for a second opinion if you are concerned- politely, of course.

[Mayadill in reply to 123-go]

Minor anecdote. You could say my gut knew best. i was 13. I was two days back in the main ward from Intensive Care following spinal surgery. It was fish and chips for lunch. I said I can't eat that. I'll be sick. Nurse said eat it. i ate it and promptly brought it all back up again. Nurse had to clean me up. I was in a plaster jacket from chin to hip and barely movable so that wasn't a particularly easy task.

[123-go in reply to Mayadill]

How awful for you! I hope she learned her lesson 😡.

[Mayadill in reply to 123-go]

Thanks! Doubt it, probably in Sister's Rules the children should not be spoiled or something! But going back to what you said about 'doctor knows best', what runs through it all from 13 yo me to the terrible experiences people relate here is they are taught to pronounce with absolute confidence and of course sometimes what they pronounce is total drivel. There is really no binding reason to think they must know best, no reason to think a GP must know everything about everything and no actual reason to think a rheumatologist must know everything about your PMR. A rheumatologist is a person who has specialized in the rheumatological diseases. There are an awful lot of those. If s/he is a single-handed Consultant, s/he sees everything from tennis elbow to lupus. Might have a special interest in sports injuries or RA. Might if you're lucky have a special interest in PMR. There's a certain amount of fuzz around seeing The Specialist At The Hospital. Basic point is you're not actually seeing a specialist in PMR at all.

[123-go in reply to Mayadill]

In my own experience I have-with one blip- been fortunate to be in the care of a rheumatology specialist who spent the whole of his career researching PMR and GCA and who passed on his knowledge and expertise to others and is continuing this work in retirement. He involved other departments such as Cardiology, Neurology and Opthalmology in managing my diseases which gave me a great deal of confidence. Yes, some of the stories told here are hard to and the discrepancies that exist are, it seems, universal. However, it may well be that we don’t hear all the success stories because the beneficiaries don’t need support the forum offers.

The following is another interesting article written in 2016. Things don’t seem to have moved on a great deal since it was written although it’s clear that a number of members of this forum are managed by forward-thinking, dedicated professionals who believe in patients playing an active part in their own care.

health.org.uk/sites/default...

Another anecdote- ‘Rome wasn’t built in a day’!

[Mayadill in reply to 123-go]

Yes, exactly. I too have had good medical care and of course the population here is skewed towards those who have problems. It's still a scary space in medicine where someone has to be feeling - well, fighting fit, to deal with the system, or to have someone who will fight your corner, without other prejudices one might come across - elderly, female. Interesting article but it really shouldn't have needed to be written: they should not have to be told to behave like decent rational people .

[123-go in reply to Mayadill]

Absolutely!

[Megams]

~Great reading and so relevant to being our own best advocate - no longer can we just rely on our GP to have the answers. Doing our own research + keeping up-to-date vital~

[Mstiles]

Thanks for sharing! Unfortunately so true. Describes perfectly US healthcare. In the last 3-4 months I seem to have rapidly gone downhill, with pain everywhere and multiple problems in my body. Visits with my the PA and GP, (and two dentists), resulted in X-rays with no real explanation from the PA and GP of results and prescriptions for pain medications with codeine, one of which caused unbearable side effects. A referral to an orthopedist after 4 months of this. I can barely walk.

What happens when you’re too old and exhausted to do all the necessary research and cross checking and trying to find different doctors and discussing with your GP in the 15-20 minutes allowed, and you have no one to advocate for you?

[PMRCanada]

Interesting…..thanks for sharing. Makes me grateful for my GP who is the central medical professional who fields my multiple health woes and refers as need be. I like that he is young, but not too young if you know what I mean. He also has a colleague with PMR so that benefits me as his patient I believe. My specialists copy him on bloodwork results and communicate with him providing updates. Despite these efforts there have been a few unnecessary waits for diagnostic tests, but always tracked back to the receptionist/admin team.

[HeronNS in reply to PMRCanada]

I know what you mean. My current GP is like my old one who retired in 2014, and I am so grateful, having in-between experienced the non-care of a very young doctor who only prescribed a major painkiller (which I didn't take, contraindicated for me) for my as yet undiagnosed PMR, and then the middle aged woman who diagnosed PMR but when I mentioned other things always answered that she wasn't worried about that....

Seriously, getting a good primary care physician shouldn't be like rolling dice!