Rheumy appointment

This was the first doctor's appointment that went horribly wrong that I did not cry during or after, walked out of the office and actually laughed at the doctor at one point.  We actually went out and did some shopping after this appointment and laughed when we told my dad, been using his lines ever since actually.  The saddest part of all of it was that he was a rheumatologist who actually thought he knew what EDS was!!! So here we go....

We got in and the receptionist goes over everything and asks for the names of medications I take.  Well since the list can be pretty long I normally just print out a copy of it to give to the doctors to just put in the chart instead of having them copy it all out.  First hint that this guy was 'odd' was the girl literally cut around every single sentance, there was no white space at all because the doctor liked the medication list in a certain part of the form that he uses (sorry for trying to help!).  I told her she could copy it down if she wanted but she finally got it to fit.  I was called in straight to his office once I had been checked in (there was no one else in the waiting room).  So mom comes with me and we enter this little office that has two chairs, an exam table that seemed more to fit a gyne office than a rheumy office, his little desk and computer.  While he is looking at the computer he has his back to us, the room was so small and badly laid out.  This all noted before the appointment even started.

He goes over my chart and asks why I am there.  Not a question I expected, my GP looked like he had sent a pile of information and a letter but anyways.  I tell him that I was looking for a doctor to take over 'managing' my EDS issues.  Right off the bat - "There is no cure for EDS", but said in a tone like I was stupid to not already know this.  At that point I look at mom and she goes in that my old rheumy had a stroke but had been in charge of medications, tests and anything EDS related as my GP doesnt' know enough about it.  At this point he looks me over and turns back to my chart.  "Who has put you on these massive doses of physcotropic medications?". Huh?  I take 110mg of elavil at night for headaches and 100mg every 12 hours for nerve pain.  I tell him that my GP did it and the reasons for the medications.  He then asks why I am on so much pain medications because... here is our favourite line... "EDS does not cause pain".  Thankfully, hearing it so often I expect this now and answered back that no, EDS in itself does not cause pain, but the dislocations and sprains that are caused by the EDS do cause pain.  He feels my doses are too high and I need to stop all my medications.  Mom but in a this point and said that it was obvious the pain meds were needed and anyways, I always try advil first and only take meds if it is really bad, or an injury that is going to cause pain and I take them to try and head off the pain before it got to bad (which my old rheumy drilled in to my head and I finally accepted).   He tells me that these levels of medication are going to turn me into a drug addict and I will have no options left when I am older.  Mom just said "We watch them" and that was it thankfully. He turns and looks at me again, not saying a word and then it was at this point that I realized that the appointment was not going to be productive.

"How much do you weigh?" followed by a quick calculation and telling me that if I just lost 60lbs I wouldn't have any problems.  I have never been at that weight since I was a child and I dont think I am that overweight.  I would like to be 20bs smaller but have more important things to deal with.  He goes on to tell us that ALL my joint pain is because I am so heavy and all I am doing is wrecking my joints.  I ask him what does my weight have to do with my wrists and shoulders and get his patented 'Well, okay, but..." line.   Mom tells him that we are going through things right not to find out what is going on with my stomach and went to say "She is having a gastric... " and he jumps up with 'Oh good!' and I quickly corrected him and said I am having a endo-scope done because I have gastroparesis and swallowing issues that we are trying to figure out "Well, okay, but..." mom tells him that I do not actually eat that much, and that I ate barely anything anymore because I can't eat it.  Get this one.... "Well people in concentration camps weren't overweight"!!!  He tells mom (wasn't even addressing me at this point) that people who eat 1000 calories a day will easily lose weight.  Mom got mad then and said she doubted I even ate 100 calories most days (we kept track for a few after this appointment and I didn't hit 1000 any of those days).  Mom then mentioned that it was most of the medications that were causing weight issues.  He then tells me that I need to get off my masisve doses of physcotropic meds because that was the problem.  Also needed off the pain meds, the depo shot and one of the other ones.  I told him that I was not willing to stop those medications but he kept insisting I needed to stop the elavil and why did I need it anways.  I told him that if I stopped taking it I would be stuck in bed for a week at a time basically every other week because of severe headaches and that the elavil was the ONLY thing that we found to help them.  Then added that I have been on it for many years with no other problems and if I had to pick the headaches or the weight issues I would easily pick the weight issues.  "Well, okay, but...".  Thankfully he seemed to finally step away from that topic so he could focus on something new.

"If you lost weight you would not have any joint problems".  At this point neither mom and I were taking him seriously but decided to continue humouring him in case he did have some actual helpful information.  I told him that I knew the weight was not helping my joints (I am not stupid thanks!).  He told me that my knee problems would go away when I lost weight.  I asked him then how that worked as I was at a healthy BMI and weight when I had all three of my knee surgeries and problems. "Well, fine, but..." I then asked how my weight impacted on my wrist and shoulder joints. Well when he had no answer for that he started on the next part which just blew me away!

"If you stopped doing acrobatic activity you wouldn't dislocate your joints"!!!!!  I actually laughed out loud at this one and just looked at my mom wide eyed and mouth open.  I could not believe he said that.  After laughing I told him how the first time I dislocated my wrist was when I went to turn my bedside lamp on.  How I can dislocate my wrist / elbow getting up off the couch, how I dislocated my knee getting in the truck. "Well, okay, but... if you just stopped doing those things you wouldn't have joint problems".  Mom got mad at this point and again repeated things I had dislocated and how (opening a jar, cutting meat etc) and what was I going to be allowed to do?  I asked if he expected me to lie in bed in a dark room 24/7 because I dislocate turning on lamps, getting out of bed, even rolling over in bed etc.  "Well, okay, but..." At this point I started getting my coat on but he didn't seem to get the idea and mom took over because she knew I was done.  She asked about the autoimmune testing and he goes on to tell her that I have no autoimmune features (did I mention he never touched me a single time during the appointment?) and I probably had a chest infection when I had blood work done ?!?!?!? He then said that they should be re-run so he pulls out a blood request form.  He then goes "I am going to test your for all metabolic disorders too". Thanks, been there done that.  Looked at the form when he handed it to me and all it was was ana, c-reactive protein and then cortisol, diabetes etc.  More tests for metabolic disorders than actually rheumatological disorders!  He then said he wanted to see me back in a week.

We walked out of the office and the receptionist ask if I need to make a follow up appointment and mom looks at me and I tell her 'No, I will not be coming back to this doctor thank you" and walked right out the door.  Once we were in the care we were just dumbstruck for a few minutes then startedd to go over all his little gems.  Mom then tells me I better take my 'handfull of pills' so we can go do some shopping lol.  Over the next few days we remembered things and would talk about them and just how wrong he was about so many many things.  Because that was shortly before Christmas, we have not been back to my GP to go over this appointment but that should be a fun appointment too!