Who knows more? You or your MD’s? | Arthritis Information

 

Hi All,

I was reading some of the posts since I got back and on one particular post to what appears to be a newbie, there were multiple responses from members that basically said 'trust your doctors; they know more than you do".  Yet, in post after post I've read here there are people that have been treated horrendously and callously by their MD's.  Since this poster was new I didn't want to ...what?...rain on the sympathy (or whatever) so....

But now I want to ask; Am I the only person that feels I know my body better than any of the doc's I've seen?  I've always assumed it was because I chose non-standard medicine following infectious theory instead of the usual Auto-immune theory. 

Am I the only person fighting for the meds I want?  I've seen posts from people that wanted to switch meds and had to fight for it?  What about pain control?  Has your doc dealt with it to your satisfaction from the beginning or did you have to fight for that too?

Do I have the record - 10 docs and counting trying to find a local to monitor me on AP.  And I've only been diagnosed 15 months.  :-)  How long have you been ill and how many doc's have you had?

Thanks in advance,

Pip

I've had RA for 13 years and I've had two Rheumatologists. The first one was older and didn't believe in treating me aggresively. I switched after butting heads with him concerning me starting Enbrel right after it came out. He wasn't sold on the biologics yet. My doctor now is fabulous. He listens to me and my concerns. I do a lot of research about RA and the newer drugs, treatments and so on. My doctor is a partner in my healthcare, he and I are responsible together for making decisions concerning what's best for me. He is also really good about the whole chronic pain issue. I had a lot of pain before the Enbrel kicked in and he had no issue prescribing strong pain meds. I do think it's important to trust your doctor and have confidence in their abilities. But it's also important to become knowledgable about your illness, to ask questions, seek answers, in short to become an informed consumer.


Sarahclarky1439234.7198726852

Gosh,

I have had such good Doctors. I have of course, had to re-arrange my brain mass in order to get my brain to finally believe that Doctors are medically smarter than me and that i should do as prescribed. All of my Doctors constantly tell me, "You know your body and pain better" and they allow me to adjust my prednisone dose and allow me to pretty much prescribe my own pain meds and oh yeah, Buckeye, Doctor Clay wrote me  script for oxicodoneHCL, no fillers, pure opiodes, no acetametaphin to cold filter.Only problem is it must be renewed every month. As Doctor Clay says' "Larry, I don't want you in pain."

Remember the saying, Any man that is his own lawyer has a fool for an attorney? Any man that has himself for a doctor...............

LEV

Pip~

I would be hard pressed to think any of us know as much as a doctor.  However, I think it is more than fair to say that we know our own bodies better.  I have always said that we need to be our best advocates.  However, there are many other things that are taken into account by doctors, things that we don't even think about.  As far as trusting your doctor....I think it is very important to have a TEAM that you work well with.  That includes everyone from your nurses, doctors, radiologists, pharmacists, etc. 

Phats

Hi, We on the board have had a lot of experiences. Some doctors are great and other's not, so the best we can do is search out the better doctors. I don't think I'm smarter than my doc but often I know more about what is happening to me (with or without certain meds, etc, what I'm experiencing (like pain), where and when. We see our RA doctors infrequently, especially when we start to feel better. They give us their best and we hope that works. I'm currently in my 3rd month of Remicade, I didn't think it was helping , it may not have been, for the first 2 months, now together with increased amount of MTX, and still on a 7.5mgs of prednisone , and decreasing slowly, I'm feeling much better. It's been a long hard process, with a lot of pain and suffering. My biggest complain was that I couldn't get to my doctor when I wanted him to help me (during Christmas, Thanksgiving , vacation we are out in the cold!!), This isn't easy to explain, but neither is this disease. I think everyone needs to try to evaluate their situation, then talk to the doctor, him/her listen to us then we listen to them and come up with a plan. Unfortunately the meds usually take a long time and in my case months. Be patient was what I heard over and over again. I wasn't patient but I did have to wait what seemed like forever for my pain to quit (prednisone I credit with that) and now the swelling and stiffness has lessened with Remicade and MTX. Sarah

Thanks All!

Sarah -

I agree with all you've said - but the last line really hit home to me.  I guess I'm beginning to believe that we are 'informed consumers' and have the right to 'shop doctors' until we get one that will work with us the way we need to be worked with in order to heal.  Technically, my PCP is a doc that laughed when I said I was 'interviewing him.'  I figured he had the right sense of humor about it. 

Larry -

LOL - except in my situation I know I'm smarter than most of the medico's I've seen over the years.  In the past I've been so screwed up by the medical profession, from a stroke from overmedication to finding a nurse in my room and having her say "oops, wrong room" when she's messing with my IV. 

Phats -

You know, I may not trust most of my docs (except one) but I do trust my pharmacists.  There are 2 that have jumped in and saved my life on multiple occasions.

Sarah -

My problem is that I no longer believe that they give us their best.  The more I learn about how they get paid and how they work, the more I believe that what will help me is not something they are actually interested in learning.  I'm not trying to take away the illusions of people that still believe in the medical establishment (or Santa for that matter :-) - I'm just saying what I have found.  As scary as it sounds - I knew my body better than the doc's I saw and I'm in the process of learning the science behind it.  I actually had the fleeting idea of going to med school today - but quickly changed my mind.  LOL.

Pip

P.S.  Does anybody else always seem to see these articles?  I've actually read all the other articles she's quoted as well as the studies.  Sigh

http://www.latimes.com/news/opinion/la-op-abel27may27,0,7635 487.story?coll=la-opinion-rightrail

 

Pip

Pharmacists are often forgotten and they play a HUGE role in our care.  I know that I take mine for granted at times.  It is so very important to trust your doctor.  You hit the nail on the head when you said that we are the consumers.  Keep going until you find one that fits your needs. 

Phats

I hate to mention this here but to be honest I very often do know more about the medication side of treating my RA then my doc...I am kinda-sorta 1.5 years short of a PharmD. But that was 2.5 decades ago and might as well be a billion dollars ago.

But I do not assume I know more though. While I fully understand the chemistry side and the med classifications, etc...I lack the decades of experience my doc's have in actual clinical situations. But because they know my background and one even watched me grow up and knew when I was in skool and stuff, we have great conversations about treatment options. I have even gotten one to seriously looking at some of the alternative therapy options. Simple stuff such as options for sleep aids and inflammation (especially turmeric & ginger).

I did turn him (my GP/Internist) on to MSM & emu oil. He actually tried the emu oil himself as was sorta surprised it really works as well or better then the more costly and funky smelling options.

I am working on him about the benefits of both GABA to help inhibit pain signals as well as the fact that I get huge pain relief from MMJ. The GABA I might get him to look at...but he is simply to worried about legalities to even consider MMJ for now...but he did agree it has benefits not that he would say it in front of anyone else...told him he was a chicken-sheet...then he said no more pain meds and then I praised him for the medicinal gawd he is (actually I think I used the word "goddess")...he wrote the Rx....hehehehe...

I do not have as close a relationship with the rheumy but he is very aware of alternative options and actually encourages patients to try them.

But we have been known to what could be politely called "butt-heads" on several occasions. Mostly when they try and thing for me and forget they are simply a consultant I am paying (and that is a capital I as I have no health care insurance). I am pretty insistent that as a consultant they need to sell me on their ideas as much as I need to explain my ideas. I have found many doc's react poorly to this concept...but my attitude is "screw 'em" I am not their mommie and do not need to baby them anymore then I want them to baby me.

A couple summers I worked in a hospital pharmacy as a IV tech...mixing all the IV's for patients in the hospital. I was able to observe that as a rule doc's despise the PharmD because the PharmD really does know better in terms of medications, especially for complicated cases. This really helped me be more diplomatic in approaching my personal doc's who did not know me.

BTW, as a rule most drug store Pharmacists are simply BS degrees whereas most hospital pharmacists are PharmD's...the primary difference is the last 2-years in the PharmD program is pretty much all clinical. The BS degree program does not include any clinical training that is worth anything of note. But a BS is typically fine for a retail pharmacy but a PharmD is pretty much an must to work in a hospital and be of any real use.

I can say that there are pharmacists out there that scare the crap outta me...I went to school with them and most were to stoopid to solve simply math probs but could memorize to pass the tests...problem solvers they were not...and almost all as BS degree pharms now...

Anyway I like my doc's and we co-exist really well...though I am considering a new rheumy just because...we'll see.

Breck -

Interesting - one of my pharmacists is 'hospital' and the other is 'drug-store'.  :-)

Have you posted on the alternative meds that you mentioned.  I know recent studies show that tumeric can stop RA cold but haven't added it to my regimin yet.  Please tell me more about the others you mentioned.

Pip

P.S.  Nobody commented about the link.  Doesn't that freak you all out.  I know it's Celiac - but - how many of us went from doc to doc in the beginning before getting a firm diagnosis?

I've read how difficult it can be for some to get the proper RA diagnosis. That was not the case with me. I had ruptured my achilles while running and when it became obvious after a year or so that there was something else going on, my Orthopaedist sent my to a Rheumatologist. I was diagnosed quite quickly with sero-negative RA. I started MTX 6 weeks later. I guess I'm lucky to have found have some very qualified and knowledgable doctors.

Sarah

I really just think it all depends on the doctor. And I'm wondering if what you're referring to Pip, is where people are running into doctors who are telling them "you can't possibly be feeling that" I think that's (sadly) what a lot of people on here have run into. Perhaps they have gone through SO many treatments, the doctor is frustrated and questioning the diagnosis, or whatever, but they sometimes begin to tell you how you feel - and NO ONE knows that better than *you* Did I make any sense????

Sarah - you sound very lucky indeed.

Katie - I think I mean the whole kit and caboodle.  When I was getting sick the ER docs' said it wasn't bursitis.  OK, understandable, they're only seeing me one time in screaming pain.  But in the beginning when I had the CAT scan of my salivary glands THAT doc said "any other autoimmune responses come back and see me".  But I was new to all this and didn't connect the dots.  How could unexplained pain in my jaw = joint pain.  But these docs see this all the time.  They should have.  Get my point?  When I finally got a diagnosis I was able to research and that lead me to AP - so how come I had 9 doc's willing to prescribe Minocin but none willing to actually monitor me.  That's crazy.  It's like they'll give you what you want but they're not responsible if something goes wrong.  On a drug the ACR considers a DMARD.  Or when I was in screaming pain but nobody wanted to give me big time pain killers.  Was I going to become an addict in a month?  And even if I did, wasn't that better than being incapacitated by pain?  One idiot doc will never know how close he came to being punched by my normally quiet and laid back husband when he suggested that 'ice is good for that'.  And that moron was my husband's beloved aunts' rheumy until she died of RA.  How many people did he leave to learn to 'live with the pain' in his years as a rheumy?

Again, I thought my experiences were kind of rare considering I'm a medical error magnet and I chose an 'alternative' form of medicine - AP.  But more and more I see post about the callous and inhumane docs out there and THEN I read another article in the NY Times or LA Times outlining efforts for disclosure by docs of payments that Big Pharma gives them.  How could that NOT influence which drugs we are offered?  Do you realize there are only 2 states that mandate that kind of disclosure - but amazingly - it's federal LAW if you're buying a house.  Gee - my house perchase demands disclosure of conflict of interest info but my health does not?  This is crazy.

I'm sorry but I must not be handling this well today.  My knickers are in some sort of twist.  Guess maybe I shouldn't read all those article.

Pip

I would not say I know more about RA than my doctors--but you must be your own advocate.  It is my body--bottom line.  I have had some horrible experiences with them.  I went to 5 doctors before the final said "Have you even been checked for RA?"  At the time I knew about arthritis but had no clue there were different kinds.  A woman who had RA (very crippled in a wheelchair) about the time of my 2nd doctor--said to me when she saw me walking and my swelling---"Honey--take some good advice--see a Rheumologist."  Best advice I ever heard-- if you can convince a doctor you need a referral when they say nothing is wrong.  A number of lay people had told me my hand looked like Uncle Joe's who had arthritis or someone else in the family very crippled from the disease--however the doctor's could not see my by-the-book symptoms, the swelling both hands and ankles, the nodule on the elbow, I can go on and on but I won't.  I do question everything the doctors tell me, I check it out on the internet, I question other people taking the drug--again bottom line--it is my body.  If it is screwed up because of a doctor's mistake--I have to live it or die because of it.  It really will not affect that doctor very much.  Also, quality of life is very important. 

I don't think this just applies to RA patients, it applies to everyone who goes to a doctor for whatever reason. 

I have good insurance but a lousy doctor.  The clinic I go to is very nice and they have this 20 minute rule, you never have to wait more than twenty minutes.  I thought that was great until I realized the doctor cuts me off when time is up, every time.  The only reason I go back there is she always gives me the meds I ask for.  I depend on my rd to brainstorm with me.  She takes the time.

I read the article and was not surprised.  This twenty minute clinic is quite busy and only takes good insurance.  It is very profitable.  These are the doctors who are in it to make mega bucks.  They could care less about getting to know their patients.  I have never gotten free samples there but I sure would not go there for a diagnosis.  Pharmaceutical companies being in cahoots with doctors does not surprise me I have only had a couple of bad experiences with docs.  I was lucky enough to be in the medical field and put 2 and 2 together and figure out something wasn't right.  I have had to fight for meds with those docs before.  Then I gave up and moved on to find a doc that had their heads on right.

I don't think I know more than the current docs I have now.  They are pretty good.  I don't have to fight for anything and my PCP is great at my pain management.  My PCP and rhemy work very well together and my PCP always gets a copy of the notes from my rheumy. 

I feel that my doctor is basically my employee since I am the one that pays him...indirectly of course thru insurance and co-pays...and that he should be working for my best interests.  If I feel that a doc isn't doing that for me...they are fired and I move on. 

I don't know more than my docs but I do know my body better than anyone else.  I expect my internist and RD to listen to me, treat me with respect, and to take into consideration my thoughts and ideas about treatment.  It's taken me 5 years to find two doctors who meet this criteria. 

I was diagnosed quickly because I had a severe onset of RA.  One day I was walking and the next I wasn't.  But it has taken me years to find doctors who were aggressive enough in treating and who were not afraid to go there.  I'm 62 years old and was older when RA hit.  I don't have a lot of time to waste with trying this and that treatment.  My situation is a little different than others on the forum.  My doctors understand. 

Initially I was placed on AP therapy and had no response after 1 year.  I stopped all treatment and denied that I had the disease.  Eventually too much damage was done and I flared badly.  My next set of doctors were virtually useless.  I ran out of medical resources in the area where we lived.  AFter retirement and traveling we moved to the SW and I found 2 doctors with great credentials and who meet my medical and emotional needs. I feel fortunate.

I'm not out to change the world of medicine or how treatment and meds are prescribed or withheld.  I don't have the energy left in me for that fight, especially when you consider I was a surgical nurse for 20 years and retired as the director of a health benefit self funded trust.  My energy now is concentrated on quality of life.  I fought those battles and I think the stress of those fights made it easier for RA to enable me.

Don't wait to start treatment and be your own advocate is my only advice.   

[QUOTE=Pip!]

Breck -

Interesting - one of my pharmacists is 'hospital' and the other is 'drug-store'.  :-)

Have you posted on the alternative meds that you mentioned.  I know recent studies show that turmeric can stop RA cold but haven't added it to my regimin yet.  Please tell me more about the others you mentioned.

Pip

P.S.  Nobody commented about the link.  Doesn't that freak you all out.  I know it's Celiac - but - how many of us went from doc to doc in the beginning before getting a firm diagnosis?

[/QUOTE]

Howdy Pip,

Yeah, here and there I have mentioned some of the alternative Tx's I have tried or use. So there are around, but also I try and mention that because they work for me does not mean they can work for someone else.

Tumeric does help me a lot. But it does not stop anything dead cold in it's tracks. I Find real (not artifical) ginger ale helps me more with inflammation. I even make my own at home now using a Soda Club soda maker and my own ginger extract I cook here. I save the ginger itself and sweeten it with Stevia so I can nibble on a piece now and again as a candy. I do not get much relief from using cooked ginger though.

There can me so many factors in getting these herbal options to work. I suspect much of it is due to inconsistent QC from the mfg's. From my personal experiences I have found some herbals will work for a while then stop. Often it is associated closely with a new bottle or a bottle from a different batch. I keep a journal tracking anything I feel is important on any given day plus times, activity, weather conditions (actually this turns out to be fairly significant), meals...etc...

Anyway all of that might be purely anecdotal or meaningful. At the least it helps me deal with the frustration in a constructive fashion rather then being destructive and falling into a depression so days/weeks/months...hehehehe...

I do have to say that recently taking GABA has helped a lot. I am not sure exactly why beyond it being part of the inhibitory portion of nerve re-polarization. But there is a difference when I take some. Often I can ride out a rough spot that is an hour or two before the earliest time for my next "Vitamin-V". It also helps me relax. Dunno if it's placebo or real but I never really care if it works...

One day I plan to put together a blog for this but...well, it will be that mythical "Real Soon Now"...

As for the pharmacists really both can be GREAT...but anymore the retail people are so busy they are just highly paid Rx Tech's...they simply do not have the time to spend with each Rx or patient. SO many good people are just buried under paperwork or the policies of a particular store that they really never get to use what they know. It's sad...and as with any profession there are good & bad...and those who passed their boards and the only way it would seem possible is because they had pictures of someone important doing something they might not want anyone else to know about...hehehehehe...we gotta guy at our local Wally World like that...but he is nice enough and I suspect just rusty because he is expected to fill x-number of scripts every hour, period.
I will be very respectful and not contribute to this thread LOLI think it is incredibly arrogant to claim and shout "I know more than my
doctor". Hey, it took me a long time to get diagnosed, but it was partly
my fault--I kept going to the same doctor when I should have gone to
another. AND to encourage others to believe that they too, know more
than someone who went to school for --what 8 years?, trained with other
doctors in a hospital-for how many years? Even if you went to college for
4 years, that is less than half the time they spend learning. Think about it.

Just like any field, career, there are always bad, even priests. But that
doesn't mean they are all bad, or even 50% are bad or since you met a
couple bad ones, you are smarter than all of them.

Yes, I know my body better and I need to communicate what the problem
is...if you have that many problems communicating what is wrong. Maybe
you are part of the problem? Or you are looking for trouble. Looking for
them to not agree with you. Hey, lets blame everybody else for our
problems, that will certainly help.

I am not saying that to blame anyone, but the only people who truly
believe they know more than experts/rhuematogists is someone who is
taking medicine outside the conventional medicines. If that is you, fine.
But really, to lump all of them into this evil box is stupid. It is stupid to
think you are smarter than the majority of rhuematologists. It is not going
to help you partner with one, nor help others here.

We are not sheep.

Bee

I just have to mention one more item.  When trying to find a new dcotor in my area---Upstate NY--I found they--the office people--will not answer any questions until you tell them what insurance you have--they demand the id numbers to be sure you are covered.  They check it out and then call you back and say--oh yeah the dr is taking patients.  I was so turned off by that.  That does start a thread of distrust from the beginning.  In getting a RA doctor, my PCP had to send my tests to the new doctor's office and they determined if they would take me as a patient.  So you sit back and wait to see if you are "worthy".  Unfortunately, it makes it very difficult to change drs if you are unhappy with one for any reason. 

What an excellent post!  I could go on forever on this topic-or at least for a very long time, but I'll save my numerous, wrong diagnosis despite clear and precise patient (that would be me) information and textbook symptoms.  But NO...each of them had their own ideas as to the conditions I was suffering from and none of them bothered with the specific tests that the patient (that would be me) was requesting.  I almost died from thyroid storm once because of a practitoner who knew that I was "just a high-strung person experiencing a little bout of anxiety".

Did I say I was going to save my horror stories?  Yep, I think I did.

Anyhoo..heres the deal:  I had my first visit with a rheumy at a major university teaching hospital and will see him again this coming week.

You know how sometimes you can just tell that you and the doc are not a "good fit"?  Well, I could tell from the moment he entered the room and it was pretty well comfirmed, in my mind, as the appt. went along, that our personalities were very opposite and that I was not going to be comfortable being treated by this person. 

I want to continue at this hospital clinic but don't quite know how to tell this man that I'd feel more comfortable seeing (or as one responder said, "interviewing") one of his associates.  I'm a pretty straight forward person and if my second appt. with this doc is the same as the first, I will do so, but I'm concerned that this guy will inform his colleagues to be on the lookout for a picky patient, or, worse yet, for a wacko who had the nerve to tell him that she didn't think they were a good fit.

Any suggestions as to how to approach this in a more tactful manner?

Thanks for your time.

Why don't you just say what you said in your post. You think that our personalities were very opposite and that I was not going to be comfortable being treated by you. It seems like the best thing to do in that sort of situation.

Sarah

Breck -

I told a friend that I was going to start organizing my files because I just found them!!!  I'll see if I can find the post/study on tumeric.  If I remember they gave rats something like 3000 X the RDA and it did stop it in it's tracks - but a mere mortal would OD on doses like that.  Still it's interesting that they thought it was something like a natural ABX or something.  Is there a ginger/stevia recipe?  Do you do anyting to it?  If so can you email me or post it?  Also, tell me more about the GABA and what you meant about the 'inhibitory portion of nerve repolarization'.  That rough spot while the GABA wears off sounds like when we on AP herx and realize that it's gone 'dose related' - meaning we're hanging on until the next pain killer.  LOL. 

LinB -

Were you taking a lot of Vitamin D when you were on AP?  And, please, how long after you stopped until you had that flare?  Was it immediate?  Or something like 2 years later?

JustSayNoMore -

Sweetie, I don't care if you disagree, say what you think.  Just be polite!  I like some of the stuff you've posted under odds and ends and was going to ask that you forward on to me via email anything you get like studies and stuff.  You're seeing some interesting things.

Catnip -

I really liked what you wrote about docs and if they make a mistake
it won't effect the doc very much".  Did you all notice the move to limit malpractice to something like 250K?  Lawyers for the docs and medical associations have run ad campaigns designed to scare consumers by pointing out 'media lawsuits' like the McDonalds hot coffee suit.  Even tho it was a lot worse than the media protrayed everybody thinks the jury was nuts to award that woman so much money - only it really was a lot worse than the jokes portrayed.  My point - what people think is real is sometimes a lot more real than the actual cases - and regular people, unfortunately swayed by media hype and astroturfing etc, will probably vote to limit the lawuit awards.  So, the docs have NOTHING between them and the fear of making a mistake.  It's not uncommon to joke that doc's have God complexes - and you can't sue God - so again, what's (or who) is protecting us?

Also, OMG, I cannot belive how much I agree with your insurance thing.  I heard that when I called AP docs!  It almost turned me off from trying AP - I was like, darn, they really want their money up front don't they???

ALzmama -

You're not in MI are you?  Because your situation sounds a lot like mine!  If you are I can give you the scoop on a couple of the docs at the Great U.  LOL  And I agree with Clarky totally - just say what you said in the post.  Write it out if you have to (I've done that :-).  Maybe switch it to make it sound like it's the rheumy's idea. 

Hope you all have a good night!

Pip

 

I agree with what BeeBee said....There are good and bad memebers of every profession. My doctors have been very good, but patients need to remember that they need to be active partners in their health. You are the consumer. If I'm treated badly by a business, I don't spend my money there. I make the choice to inform myself about the treatments and medications that I chose to use. That's part of my responsibility. You can't be passive concerning your healthcare.


SarahAlzmama  Maybe you could call the nurse or office staff of the doctor's office and talk with that person about changing doctors--I am assuming in that practice. 
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