The Worst Doctors Appt in my Life

Firstly, I want to apologize ahead of time for the long post.  I want to give everyone all of the details of the horrible doctors appointment I had which I couldn't do in a short post.  Not only do I want others to know about my experience because a few have asked, but I also want to make sure that no one else has to go through what I went through with this physician.

So, with that said...

I had the worst doctor's appt I've ever had in my life.  It was my 2nd visit with a new GI doc who supposedly specializes in motility issues.  I have a regular GI doc but I wanted to give her a try since she specializes in dysmotility.  The first appointment went well.  She said she didn't know much about mitochondrial disease and she'd need to study up on it.  She also wanted a copy of all of my records since I've seen multiple GI doctors up to that point and had lots of tests.  So the plan was to get the records to her and come back in a few months.  That's exactly what I did.

However, the second appointment, obviously, didn't go anywhere near as well as the first.  First, she explained to me that my GI problems are not because of my Mitochondrial disease, even though my mito specialist and my geneticist said they are. (ALL of my problems stem from my mito)  She said it is because of my POTS/dysautonomia (which is caused by the mito, btw).  She proceeded to tell me a bunch of other stuff regarding my mito that just wasn't true. I think she looked up the disease that my genetic test showed positive for and decided that's exactly what I have and I must have all of the symptoms of that. (Even though I'm not blind and that's the primary symptom.)  However, my mito specialist and geneticist both said that may be only part of what's causing my mito; that I may have a nuclear mutation that's causing my mito along with the mitochondrial dna mutation that normally causes LHON.  However, no matter what I said, she was right and I was wrong.  There was no way the patient was going to know more than her.

Then she saw that I am on pain meds and it all went way downhill from there (more so than it already was).  She said she couldn't treat me if I'm on pain meds and I'd have to get off of them completely.  My mom told her that wasn't going to happen because of the extreme pain my mito causes all over my body.  She then said "Well, then there's nothing I can do for you."

Why I didn't walk out the door right then and there, I don't know.  I can say that my mom was already up out of her chair getting ready to go.  I was determined to get somewhere with this doctor.  I had already seen her once and spent a lot of time getting records together, waiting 4 months for another appt, and driving to the office to see her.  I wasn't going to waste all of that time and energy.  Plus, she's a GI motility specialist and I want to be fixed!

At one point in the conversation the doctor said that she couldn't know for sure that I have gastroparesis (slowly moving stomach) without testing.  I proceeded to tell her that I have had lots tests done and she should have the records. That doesn't count the year and a half of symptoms of gastroparesis and colonic inertia... but, once again, that would mean she would have to listen to and trust what I said. She asked me what test I had done to determine that I have gastroparesis (even though she had all of my records right in front of her) and I told her that it was a gastric emptying study.  She asked me if I had it done there at the hospital she works at.  I told her "no".  She then told me that she doesn't trust the results of the test unless she's the one doing it.  Nope, she's not cocky at all!  My mom said that she could do the study and the doctor said she wouldn't do it as long as I'm on pain meds.  I then said, "Okay, how long do I need to be off of the pain meds for that?"  She told me 48 hours.  If she's a doctor at all she knows damn well that I can't get off of pain meds completely for 48 hours without getting sick from physiological withdrawls and that's not to mention the amount of pain I would be in. Trust me, I know from experience from the time that the pharmacy screwed up my order.  I was so sick and stayed that way even after I got the meds in my system.  Once something screws with my body (withdrawls, virus, etc.), the mito wreaks havoc.  However, I don't think she cared.

My mom explained to her that she had not discussed treatment even once.  She was so worried about what was causing my gastroparesis and colonic inertia (slow moving bowels) that she did nothing but argue with us about that instead of discussing treatment options.  Once my mom brought that up she quickly rattled off the names of a bunch of meds. She took 30 minutes to prove that she Googled Mitochondrial Disease and argue with me about the cause of my GI problems and less than a minute to tell me treatment options... and that was only because my mom asked.   She then said that none of them would work, though, because of the pain meds.  I then asked her "if nothing works because of the pain meds, then why does the domperidone help?"  Her immediate response was not the answer to my question, but instead saying that she cannot condone the use of domperidone since it's not approved in the US.  She said, "especially since you have cardiomyopathy".  When I told her that I don't, she even argued with me about that.  I know my own body, lady!!!  I'm pretty sure that when she looked up my disease on wikipedia and saw that it can cause cardiomyopathy, she assumed that I had it instead of looking at my records.  Obviously in her research she didn't find that there are over 40 different types of Mitochondrial Disease and within each type each person is different.

After I explained to her that I couldn't get off of all pain meds for 48 hours we were all basically done.  She had said that she wouldn't treat me as long as I'm on pain meds.  So my mom was definitely ready to leave at that point.  There was no reason to stay anyway.  As my mom was putting on her jacket and gathering our things, I proceeded to tell the doctor that I was actually planning on getting an intrathecal pain pump.  Because of that, I would not have the side effects of the pain meds anymore. (At that point I wasn't trying to get anything out of her anymore.  I was just trying to make her look foolish or feel bad for jumping to conclusions and saying that she wouldn't help me because of the pain meds.  Of course, it didn't work.  She's WAY too cocky for any patient to make her feel bad.)  That would then eliminate the one thing that she thought was causing my gastroparesis and colonic inertia/dysmotility..  Once again, I was wrong.  "Who told you that?" she said.  "You will still have the side effects of the meds while on a pain pump."  I explained that I had done a ton of research about intrathecal pain pumps for one; and, for two, the anesthesiologist that is my pain doctor informed me of that fact.  However, that didn't matter.  Just like she didn't care about what the mito specialist said, she doesn't care about what the pain specialist said.  She knew more than both of them.... and me, obviously.

She made it clear that she didn't agree with the fact that I'm on pain medications.  I cannot stand those doctors!  I completely understand why doctors have a problem with the frequent flyers that come into the ER all the time wanting pain medications because they're addicted and/or they sell it.  However, I have been diagnosed with a chronic disease that is occasionally fatal that is documented  to cause a significant amount of pain.  (see links below)  I am receiving those medications from a pain specialist who monitors my disease and my pain more often than any of my other specialists monitor me.
UMDF Mito 101 - page 6 of this pdf document in the section titled "Adult Symptoms".... coincidentally enough, the same page that contains a picture of me and my daughter (top left corner)!  Ha!
MitoAction Clinicians Guide to Mitochondrial Disease - Pain in Mito -
I want to point out one specific quote from this link - "Chronic pain in Mitochondrial Disease should be well managed as pain is a significant stressor and has the potential to lead to further decline and lactic acidosis." -

So, I can get off of the pain meds so that my GI system will work (even though I, and many of my doctors, don't think that will even make a difference), but I will be in excruciating pain 24 hours a day, 7 days a week.  But, of course, this doctor doesn't think about that or care about that because it seems that, like many doctors in this world, she believes that taking pain meds is the same as drinking a beer after work.  That it's just for recreation and they're not a necessary prescription for my illness.  However, they are just as necessary as my heart medications. (see quote above)

In the end my mom and I walked out of the room with the doctor still sitting there.  Out of all of the doctors I've met in my lifetime, both as a patient and a nurse/coworker, she was the most cocky, inconsiderate one and she could care less about taking care of me.  When I got out into the hall I stopped and told her that if she ever has the joy of seeing a patient with mitochondrial disease then I highly suggest that she doesn't act like she knows everything about mito and that she actually listens to the patient.  She, of course, argued back but I don't remember what she said.  I was SO pissed off by that time that I don't know if I even computed what she said.

I have never seen my mom that upset in a professional situation like that.  That's how I knew that I wasn't overreacting.  I know I have done so in the past (yes, I have overreacted before... I know you're all shocked, but, yes, it's happened) ... but, if anything, I was calmer than I should have been in that situation.  Well, on the outside that is.  The entire appointment was about nothing but arguing about the cause of my GI issues, which have been established a long time ago, treating me horribly because I take pain meds, and talking down to my mom and I.  She had no desire to help me get better.  All she wanted to do was make sure we knew how smart she is.

When I left the appointment my neck and face were more red than I have ever seen them.  Imagine a lobster...that's what I looked like.  I was not hyperventilating but my hands and feet were tingling. When I went to get in the car I could barely stand because of the weakness in my leg muscles.  I felt awful!  Not that I wasn't mostly aware already, but that definitely showed me how extreme stress affects my body.  The physical manifestations of my anger/stress were coming out left and right.

Obviously I'm not the only person who's had a bad experience with her.  Healthgrades reviews shows that only 25% of people who reviewed Dr. Esfandyari would recommend her to family or friends.
Health Grades - Dr. Tuba Esfandyari

So, if you are in the Kansas City area and you're looking for a gastrointestinal doctor who specializes in motility issues and you come across Dr. Tuba Esfandyari at KUMed, keep looking.  Dr. Tuba Esfandyari is NOT someone you want to see.