Okay, maybe not funny at the time. Or not really funny at all. Ever. But here are some of the things we heard along the way - I'm sure I will add to this as time goes on - although I think we are in a pretty good place doctor-wise. In all honesty, what I actually respected the most, was when a doctor said they didn't know the answer.
About a year into our search for doctors, I would start out the conversation with - I have a lot of questions, and that's all they are, questions. Please let me know now if you don't like that or to say if you don't know the answer - because I'm okay with it. It seemed to irritate doctors when I had a long list of questions going into a visit. I should also mention, that we have met some extremely caring and understanding doctors along the way, thank goodness. But as we meet and talk to more people with POTS or related illnesses, the doctor frustration stories are very common. Here is an article from our Articles page, that talks about some of the many frustrations doctors might be feeling today..."Why Doctors Are Sick of Their Profession" that I found interesting.
Pediatric cardiologist - One of the early cardiologists we saw said Meghan was dehydrated and needed to drink more water. I told him she was already drinking 3 bottles of Propel a day (we had heard the drink more water story before) and that she was worried about having an accident at school (she was in 7th grade at the time). He told her - God gives you everything you need to keep you from having an accident at school. Ummm. Okay. I said thank you and we left. I would have expected that answer had we been in church and Meghan had been 4. Not in a doctor's office when Meghan was a middle schooler. We were paying a lot of money for help from a doctor - not to mention all of the time it took to make and go to the appointments.
Neurologist - After Meghan had been newly diagnosed with POTS, we were looking for a neurologist closer to home who could help us learn and understand what was happening. The appointment started out well. She tested Meghan for neuropathy (painful nerve damage) and found some areas on the bottom of her feet and also just starting in her fingers. I thought we were making progress. Then I started asking my usual long list of questions and was trying to get answers about other strange symptoms and how IVIG therapy worked. I think what really put her over the top was when I started asking about PANDAS (see our blog entry about PANDAS). She finally said I was wasting her time and her other patient's time. I told her I like to search online for information and often had questions. She said - "Some people are like that." What?! Here is the perfect article for this doctor about being an epatient - "The Truth About "Your Googling and My Medical Degree" Mug.
Neurologist - We found a highly recommended neurologist about an hour away that we thought would help us find great answers. During the visit I could tell he was quickly becaming irritated by all of my questions. I had been doing some blog reading about symptoms other patients had and some of things they thought were causing their symptoms. I asked about norepinephrine and epinephrine among a lot of other things. I was already skipping several of my questions as I could tell his patience was growing thin. He wanted Meghan to try some melatonin supplements and I suddenly remembered seeing serotonin reuptake inhibitors in my list of questions. So I asked him what the difference was between the two (melatonin and serotonin) and he raised his voice and angrily said, "There is no serotonin!" There was a medical student in the room with us and I looked over at him. He was looking at the floor and wouldn't make eye contact - probably because he was embarrassed, like I was. I thought - why would you say that? Of course there is serotonin. The doctor then took a deep breath, got up and touched Meghan's face, and said he would get her all fixed up. I was still desperate for help at that time, so I just thanked him. He gave Meghan a prescription for migraines (she wasn't having migraines but he said some people have them without pain) which we used for 2 weeks. I couldn't get anyone to return my calls when we had questions on side effects Meghan was having. I was told we had to wait for our 6 week follow up with his medical assistant. I had Meghan stop taking the prescription and we moved on.
Neurologist - One of the first neurologists we saw sent out a survey to complete and send back to be reviewed before the appointment. As I was filling it out, I thought - this is Meghan!! So many of the questions fit her symptoms. I faxed it back and called to make sure it was received. When we got to the appointment, the doctor had not yet looked it over. Disappointing, but no big deal. We started going through the questions, and she immediately disagreed with me. No. Meghan doesn't have this or that - or that either...I didn't know what to say! Why have the survey if you are going to dispute what I am telling you?? I again started my long story of events and symptoms. Eventually I ask about a tilt-table test a cardiologist had brought up a few months earlier. She said it is a test where the patient is strapped to a table and moved around like a roller coaster (it's really not like a roller coaster at all). Meghan started crying because she hated roller coasters and was afraid of what the test might be like. The doctor said maybe we should slow down - take things more gradual because it was too upsetting for Meghan. I was asked to leave the room to finish the conversation with her while a nurse sat and consoled Meg. The doctor said she has a lot of anxiety and gave me a list of therapists to see. I was speechless. I went back to the room, and they left Meghan and I alone for a few minutes. I told Meghan she needed to have the tilt-table test done so we could figure out what was happening. I asked her if a treat afterwards would help. And guess what - she said yes! And she was fine. When the doctor came back in the room, I told her we wanted one scheduled as soon as possible.
Cardiologist - The cardiologist that came in during the end of Meghan's tilt table test to observe the final upright tilt had already determined what he thought was wrong with her before he had even looked at any of the tests that were done during the hour before he got there. He watched her cry while she was dizzy, nauseous, and asking to be tilted back to laying down. I watched the monitor with her heart rate and blood pressure readings and knew it wasn't normal. I was actually happy because then maybe we could get some answers and move forward with what was needed to fix things. Instead he said she needed to eat more! I again tried to explain the stomachaches that occured after she ate. His response - make her eat. He told me to look at her - she isn't eating enough. The technician tried to say something because she knew that wasn't the case either, but he cut her off. So we left knowing that we had to wait another 2 to 3 weeks for the results. Two of the three doctors that interpret the results were going on vacation. I wish that I could discuss the results with that doctor. It isn't an eating disorder. It is an autonomic nervous system that isn't functioning properly. Big difference.
General practioner - Some doctors have the approach that nothing is ever wrong and they down play everything. I get it - so many people think every little thing is something big or they exaggerate everything. But sometimes there is something! Recently, I took Meghan in for an ear infection and the doctor knew a lot about the things we had gone through. She said, "So, everything has settled down with the POTS?" That is truly something that someone says who doesn't get it. Probably not meant as anything rude, but still discouraging. POTS doesn't just settle down. It affects our lives. Every. Single. Day. We are constantly working to keep it manageable. Some days are better than others but I would rather have someone say nothing versus asking if things have "settled down."
Nutritionist - After talking with a cardiologist at one of our early visits, he determined we should see a nutritionist about Meghan's stomachaches. I really didn't want to - we tried to eat sensibly. It wasn't that she didn't want to eat. Or that she didn't want to eat healthy. It was that she was constantly having stomachaches and there seemed to be no rhyme or reason as to the things that bothered her. One day it was dairy. The next day dairy was fine and meat seemed to be the problem. It constantly changed. "Lucky" for us, the clinic's nutritionist had an opening that day. I started talking about the things that Meghan ate - at that point I was trying smoothies with fruit (which is one thing that rarely bothers her) and then adding some protein powder to sneak some protein in. The nutritionist was appalled. "What?! You are giving her protein powder for lunch? No wonder she is having problems." I couldn't get out of their fast enough. It didn't matter if it was organic, non-organic, plain chicken breast, salads or saltine crackers, or the healthiest thing you can think of - she had terrible stomach pains after she ate and no one was listening! The answer was always she needs to learn to eat better. Since Meghan has started IVIG, the stomachache problems have greatly improved - still there, but a lot, lot less. She still has to be careful when eating new things we haven't tried. She has gained 25 to 30 pounds in one year - and looks like a person again! No longer like someone with an eating disorder.
Nurse at Mayo - While we were going through Meghan's blood test results, she said everything had come back normal. I asked her how that could be - what about all of the symptoms. She looked again, paused and said that Meghan's cholesterol level was a little on the high side. Maybe eating better would help. Add some exercise. No comment from me...