Mayo Clinic Visit 1

       

Full Mayo Clinic update for friends/family/followers that have asked me to go over everything. It’s an exhausting task trying to explain so much information and events to everyone individually, so I am doing it here! Warning: this is long.

I arrived in Jacksonville with my friend, Kris, on Sunday afternoon. We met up with my mum and some family friends, enjoyed the Superbowl and Dexter. Met with the rheumatologist, Dr. W, bright and early at 8AM. Immediately he recognized that I have more than one condition going on; as he put it, a “two-pronged” situation. Within minutes of going over my symptoms, he confirmed the presence of a sensorineuro condition in addition to the RA. Sensorineuro, meaning that my brain is over sensitized to stimulation (click to read related article): lights, sounds, pain, etc. I’ve always been that way (since birth, though doctors constantly dismissed my mum when she brought this up) and quite frankly, the diagnosis didn’t come as a surprise. What was surprising is that there is a new movement to change the name of Fibromyalgia. Why? Because there is a stigma (many of you are aware of this, I’m sure. How many of you have met ER physicians that scoff at FMS patients?) and now with breakthrough scientific research that solidifies a very true physiological (not psychological) condition, the goal is to educate other health care professions to take it seriously. Thus, the name change. He went through the tender points and of course, very little pressure was required before I jumped and yelped. I had been anticipating this diagnosis for months now. It is in my family and as my pain changed and my cognitive abilities changed, I suspected FMS. I’ll be posting about the new research Dr. W discussed with me at some point for those of you interested.

Then there is the issue of Rheumatoid Arthritis. I had previously fit the profile perfectly, but over the last few months, my pain and symptoms have become more systemic. Malar rashes, pain in the eyes, on and on and on. Still’s Disease has been on the table for months now with no definitive answer. Seronegativity is typical of Still’s Disease, but Still’s is marked by abnormal Ferratin levels. Dr. W is not only testing that, but my vitamin levels, a full autoimmune profile, and ordering specific genetic tests. A genetic condition had never crossed my mind before, though I have often wondered if I would test positive for a few genetic markers found in people with autoimmune conditions or a susceptibility to them. One gene in particular is the HLA-b27 genetic marker commonly found in correlation with rheumatic diseases. 

I had a 24-hour urine collection test and a basic urine sample to look at the protein level. 26 vials of blood were taken after I’d been fasting for hours. I don’t really mind blood tests; they don’t bother me, but I can no longer donate blood or have large amounts taken at one time. For whatever reason my body just does not tolerate it since the autoimmune ordeal started and as anticipated, I was violently ill within 15 minutes of the blood draw being over. Spent the next little bit throwing up in the main lobby restroom (fun for everyone else in there, I’m sure), was unable to even keep my head up, and I ended up having to cancel the rest of the tests I was supposed to have that afternoon, including x-rays. I went back to the hotel that afternoon and didn’t leave my bed until the next morning.

Then onto the constant upper left quadrant pain I’ve been having since the end of December now. I had a CT scan with contrast a few days after Christmas to see about an enlarged spleen. Results came back stating that there was severe inflammation and my internist said that the only way to combat the inflammation was obviously to treat the disorder, RA. Simple enough. Enbrel did make a difference in my pain level. But now that I am off the Enbrel, it has come right back. Dr. W referred me to a gastroenterologist, Dr. A.

So Tuesday morning, again up early, I go and have my x-rays done. Painful due to the positioning, but easy. We met a great nurse in the process. Onto the next appointment, I go see Dr. A. This is where things get weird and messy. I was called into the exam room and my mum was told she was not allowed in, which may or may not have done me a favour, but in this instance it would not have mattered. Dr. A was friendly and had obviously read my chart, introducing himself by appreciating my Seminole status (FSU). We chatted for a few, which was a nice comfortable change, and then went onto symptoms. As soon as I mentioned the pain medication, I knew I had made a mistake. Immediately I was given the “people that use narcotic medication for chronic pain usually become addicted, constantly raising their dose from 1 and day to 2 a day, 3, 4, and then they find in time they are full fledged addicts, having had no intent of being so.” I have not upped my dose more than once in two years. Typically I put off taking a pain killer for as long as possible. Not all patients are predisposed or irresponsible. I am frequently discussing pain killer usage with my doctors and the goal is to get off of them, not increase the dose (nor would I ever increase the dose without first discussing it with my doctors). I was taken aback by his judgment and wondered what he would be saying to a cancer patient using narcotics for their chronic pain, or a patient with a visible ailment. He was convinced that the source of my nausea is the pain medicine. I disagree. I always eat with pain medication to avoid nausea and have never suffered this issue before. My nausea started at a time when I was not taking narcotic medication and is persistent. There is no pattern and I take medication to prevent the NSAID from destroying my stomach lining. Again, more judgment.

Onto the issue of the LUQ (left upper quadrant) pain: Dr. A went over the contrast CT scan I had a copy of from December. The report was not on the disc and the scan itself had been improperly copied— the CD was useless. So he requested it from the office back home and would report his findings later in the day. Simple enough. He then explained the need for an endoscopy (scope down the throat to examine the upper GI area) and a blood test to measure my cortisol level (stress hormone linked to various disorders, such as Cushing’s, that can cause symptoms I have). That was that and I left feeling okay. He gave me a hug on the way out, a sweet and unexpected gesture.

When you go to the Mayo Clinic and see a physician that orders tests, you then go back into the main waiting area and wait again for a schedule of the tests. Generally you have tests immediately after the appointment (or ASAP) for any number of days, depending on the amount and type of tests ordered. So I wait for my schedule from Dr. A for an hour and a half and when I finally received it, there were eight tests, only two of which he had mentioned in the appointment. One of which was a procedure to implant a Bravo Box on my esophagus during the endoscopy and monitor me for 48 hours, then go back and have my esophagus examined (and potentially removed the Bravo Box? This is unclear as we obviously were unable to ask questions about this test!). He ordered a gastric emptying test, which measures how quickly food moves through your system by scanning you multiple times after eating eggs mixed with radioactive isotopes (delicious…); an ultrasound; an ekg, etc. I understood the need for an EKG and ultrasound, and even the GET, but not the Bravo procedure. No way am I letting a physician I just met implant something on my esophagus for two days when he did not even tell me he planned to do this and I was not able to ask questions or discuss it. Would you undergo a procedure of any kind without knowing about it first? The whole thing was incredibly confusing. Plus, his lack of communication didn’t exactly create a level of confidence in his clinical abilities. I didn’t really want him poking around my esophagus at that point.

We made quite a fuss and finally got Dr. A on the phone later that evening. When my mum asked him why he ordered the test and what it was, that she wanted to know what it was because she’d never heard of it before, he made a sarcastic remark Well do you want to go to med school? There are tons of tests you don’t know about, but that doesn’t mean they’re the wrong ones to do. I didn’t appreciate the snark and his passive aggressiveness. I don’t doubt his intentions, but I would like to know what a Bravo Box is before you implant it on my esophagus for two days and why you neglected to discuss this in the appointment. It was truly a pointless phone call; none of the questions we wanted to ask were answered.

He was impossible to communicate with and had a major God-complex. If you couldn’t tell by now, I’m not a patient who is going to passively let someone else dictate my care without being informed and asking questions when I need clarification and information. Being a pro-active patient is a part of being responsible for your health. This doctor was not prepared for someone so young to be an active participant in her health care. I’m a person and deserve to be treated with the same respect I show you as my physician. If a physician is unwilling to communicate even the most basic of concepts with me, sorry, but I’m firing you. Yes, you can fire doctors!

Day 3: I am exhausted. Could not lift or hold a water bottle and was willing to use a wheelchair without putting up a fight (if you know me personally, you know what that says about my state of being). We awoke at 5:30 to get to the hospital on time for my 6:10AM blood test. Blood test was simple; only two vials compared to the previous 26. Then we moved onto radiology to have the ultrasound. I had an ultrasound of my liver last spring and I was prepared to experience the same pain. Typically, ultrasounds are not painful. However, when you are pressing on someone’s inflamed chest and ribs, it hurts! The tech was incredibly gentle and though it was painful and long (full abdominal ultrasound), it ended up being a critical key to figuring out a possible cause of my constant nausea.

Because I was so physically run down, I knew that another day of testing would do more damage than I was prepared to deal with. I rescheduled the Gastric Emptying test for the same week as the Endoscopy, which was scheduled for the first week of March (my spring break), and left Wednesday afternoon. Within an hour of being back at my apartment, Dr. A’s assistant called to tell me that he received a working copy of the CT scan I had done in December and found an abscess in my abdomen. So immediately I began asking the obvious questions: Okay, how big is it? Where is it exactly? Do I need to come back and have this removed immediately? Can it wait? How long can it wait and what are the consequences of waiting? She had no idea. She called to tell me they found an abscess and nothing more. What kind of a phone call is that? Would you call a patient letting them know they have a tumor or foreign body in their abdomen but tell them nothing else and expect them to be calm? The assistant took down my questions and said she would call me within the hour with some answers.

Meanwhile I am wondering why my internist back home neglected to inform me that I had an abscess growing in my abdomen. I picked up the phone and called her and demanded to know what the CT report said. She was appalled and told me the report said “no drainable abscess. Severe inflammation due to existing medical condition and prior surgery.” The radiologist had missed the abscess. She failed to do her job as a physician trained to look for abnormalities, such as abscesses. I was livid. A ruptured abscess can spread infection quickly and the concern of course is sepsis; when the infection enters the blood stream it can quickly become deadly serious— literally. Why the radiologist specified that there was no drainable abscess I have yet to figure out, as my internist and the radiologist are getting political as to avoid responsibility and legal consequences. Without a doubt I will be looking for a new internist group and will not set foot in that radiology clinic again. Whether I take things further is yet to be determined and the least of my concerns, though I will be sure to make a formal complaint at the very least.

Dr. A’s assistant called me back and explained that the doctor said what I wanted to do was “my choice.” Nothing else, no answers to those questions. How does one make a choice without being informed about what is in their body? How does one make a choice without knowing what options are to consider? Clearly this doctor was not going to communicate with me properly about any part of my health care. I demanded he speak to me and about 20 minutes later, he did call.

He then told me that I have to decide what is more important; my health care or school and that I “cannot have my cake and eat it too.” How does this rude remark help me figure out what exactly is in my body, what the next step is, and how quickly this abscess needs to be drained? Dr. A said he wants to repeat the CT scan. I agreed and asked if it were possible to have the CT scan done locally and then sent to him. Depending on what the CT scan said, I would come back and meet with him and a surgeon for a consult and go from there. Makes sense.

No, a CT scan anywhere else is unacceptable. Again, the cake remark was made. I hung up. Dr. A has been fired.

I have called my spine surgeon and my GI doctor back home to discuss what needs to be done. I am sure I will end up having another contrast CT scan here in Tallahassee and then will likely meet with a surgeon through my spine guy or at the Mayo Clinic, but I will not be going through Dr. A ever again. In the mean time, we are trying to figure out whether or not immediate antibiotics are necessary. The first sign of a major infection is fever, but I am always running a fever and they spike daily in the evenings. I am hoping to have some sense of direction by Tuesday next week at the latest.

It was an exhausting and emotional week. I had a small meltdown in the middle of the Mayo Clinic cafeteria and again last night for the first time in months. I am just so tired of fighting. The invasive tests, the constant pain and exhaustion, the cognitive impairment, the damage to my body, I am just so tired of waking each day in a body that does not function properly. On the Rheumatology front, this Mayo Clinic visit was successful, but I am just so worn out. I do feel like this doctor has a solid understanding of Rheumatoid Arthritis and is fully aware that no one patient fits a certain mold; he is looking outside the box— an important piece of the puzzle for anyone struggling with autoimmune diseases— but I hate that we are again looking at more issues here. They just seem to continue piling up. Obviously the gastroenterology piece of the puzzle was disastrous and only time will tell what is to come of the GI symptoms.

Hopefully the blog will be back to its typical posting-style in a week or so. I have a lot of catching up to do with school and I need to let my body physically recover from the stress, but have some great posts coming up that I’m excited to share :)