Adventures in healthcare

Still smiling…

The first year we lived in Mongolia, we were both very healthy and didn’t have to see a doctor the entire time. Before we left for Mongolia last spring, we had physicals, and I looked into the various medical options in Ulaanbaatar as well, so I felt pretty confident that we were both basically healthy and probably would need minimal health care, which we’d be able to get easily while here. UB has a number of very good hospitals, and our apartment would be in walking distance of one of them.

I didn’t anticipate needing to go to the doctor so soon after we got here. But sometime during the summer, Emerson started experiencing various symptoms that at first seemed to be unrelated, which is exactly how the doctors we’ve seen here have treated them. It took a break from going to the doctors and a lot of reading about causes of chronic pain in teenagers for us to figure out what the problem likely is.

When school began in late August, it started up in person, so Emerson had their first in-person PE class since 7th grade. (Emerson’s middle school in the US did PE as an outside activity, not during school hours, so it could be an activity that students chose; ours was walking/running.) The PE teachers at Emerson’s school here are of the opinion that physical exercise should be unpleasant, difficult, and painful, which is a great way to turn teenagers off physical fitness for life. (Seriously, the teacher has said, “The more pain you’re in, the more you know it’s working.” Um, no.)

The 10th grade started out with football (soccer), including running around the field several times to warm up. These were kids who had been in lockdown in city apartments for the better part of a year. There was no easing in. They were expected to go all-out immediately. But it was apparent that Emerson was having unusual difficulty compared to the other kids. They had a hard time standing up after exerting themself and experienced weakness in the knees and elbows. They started falling at school, and also having trouble holding their school bag. Once when we walked the dogs after they got home on a PE day, I watched with growing concern as they lost balance repeatedly and fell to the ground once or twice. It was disturbing to see.

When they would ask the PE teacher if they could sit out the football game for a little while, the teacher’s response was that if they were in pain, it meant they weren’t getting enough exercise, and they should just try harder. At the time, it didn’t seem like pain exactly, but as football season wore on, they started experiencing pain in their hips and ankles. They were sent to the school nurse once, but she couldn’t find anything wrong. Mercifully, football ended, and PE moved indoors. They were going to do archery (yay!), but it turned out the PE teacher needed to be certified to teach archery and wasn’t. So they switched to badminton instead. The PE teacher promised to make it the most difficult and painful badminton they’d ever experienced. Way to get kids excited about playing.

By this point, several other symptoms were becoming well established, including stomach aches (which could be severe and short-term—minutes—or dull and longer-term), headaches, dizziness, and fatigue. Emerson had started experiencing momentary stomach pains at some point in the late summer, and I thought it could be acid reflux or gas, so we tried a few over-the-counter medications I’d brought with us, and the Tums seemed to help at first. But the pains were random and often not connected to eating. Every once in a while, Emerson would just double over or crouch down for a few minutes, and then be totally fine. They’d experience a strange hot or cold flash with the pain, which would also go away when it ended.

You might be asking why I wasn’t taking Emerson to the doctor. A legitimate question. And indeed, I was. Early fall was punctuated with doctor appointments.

Early on, the stomach pain and the knee weakness were the most obvious problems, so I called Intermed, our local hospital, to try to make an appointment. When you call for an appointment, you have the option of choosing Mongolian or English, and I choose English. Then you wait, and inevitably someone comes on the line who doesn’t speak English, so you wait some more. The English speaker who finally answered asked me to describe the symptoms, and I mentioned the stomach and knee problems. She made me an appointment with a gastroenterologist and said that that doctor could then refer us to others for other symptoms. I asked if we could just see a general practitioner first, to get the overall situation assessed, but she said it was better to see the gastro first. OK, fine.

When we went to the hospital, we had to show proof of Covid vaccination to get in. You pay in advance for your appointment (it’s around 45,000 Mongolian tugriks, or $15, for the appointments we’ve had), and then go check in for the appointment itself. We didn’t know the exact sequence, so the first time we went, I asked at reception where the doctor would be, and she sent me straight to the hall where the doctor’s office was. That’s when I found out you pay in advance, so we had to go back to do that.

The doctor we saw was a very nice, 60-something woman, who asked Emerson a number of questions. Emerson kept looking at me, and I think their unreliable speech kicked in, which sometimes happens in situations like this. (Remind me to tell you about the time at Subway, when they hissed at me, “I can order my own damned sandwich!” when I started to say something after a very long and awkward pause at the counter, but then they couldn’t. It’s become our catchphrase for their unreliable speech episodes.) Between the two of us, we were able to describe the stomach pain, and she then palpated Emerson’s abdomen. Finally, she asked, “What tests would you like me to do?”

This threw me because I figured, well, she’s the doctor, right? I finally said, “What would you recommend?” She then rattled off some possibilities and said that the best would be a package that included blood tests, an ultrasound, and an endoscopy. I asked if she thought all of that was necessary, and she said yes, it would give us a chance to see what is happening inside. I thought, well, might as well figure out what is going on, and agreed to that. In the meanwhile, she would give Emerson digestive enzymes and probiotics (which have seemed to help a little but have not entirely solved the problem).

Then we asked about seeing another doctor about the knee problems. She asked Emerson to describe the problems they were having. She concluded, “It sounds like it could be neurological. You should see a neurologist.” She ushered us out into the hall and went into another doctor’s office. The neurologist was apparently available, but I had to go and pay for the appointment first, so I went back to the reception area and did that.

Then we sat for a few minutes, and someone came and asked us in English how old Emerson was. When I said 15, she said we needed to go to a pediatric neurologist and led us back to the pediatric wing. After a lot of consulting with various people there, she said that the pediatric neurologist was actually in another location, and we could go there on Monday. So we made an appointment and went home.

On the walk home, we dissected the experience, and Emerson and I were both positive about it, because it felt like the doctor was taking it seriously and wanted to really find out what was wrong. “If we were in the US, the doctor would probably say that it’s all my imagination.” Since this is what their PE teacher was saying, I could see why they’d feel that way. Also, their last experience with a doctor in the US (who was dismissive of our request for an ADHD assessment referral) was not a positive one, not to mention the last few appointments with their regular pediatrician.

I looked at where the other hospital branch was and realized we’d have to take a taxi or find a ride to get there. In the end, my landlady’s sister (who lives nearby and speaks very good English) drove us to the pediatric neurologist’s office. Emerson had a blood test, and then we saw the neurologist, who was a young woman. (Interestingly, all the doctors we saw were women, except for the man who did the abdominal ultrasound; possibly a coincidence.) She had Emerson try out a couple of things, including rapid deep knee bends, bending their elbow to touch their nose, and other movements that felt like a sobriety test. If it had been, Emerson would have failed. They couldn’t touch their nose, and they nearly fell over trying the deep knee bends; going down was harder to control than going up. I watched thinking, well, I might have a hard time with that, too. But when I got home and tried it, it was easy.

The neurologist got on the phone with someone else, and after a while asked Emerson some follow-up questions, translating to Mongolian for the other person. When she hung up, she said that Emerson would need an electromyography, which is “a very hard test, with needles.” She then asked, “Do you agree?” I asked if she really thought it was necessary, and she said that based on her exam, it was. We needed to go to a place called the Reflex Clinic, the only place in town for an EMG.

This was just the start of our adventures in healthcare. Emerson ended up not needing the EMG, according to the doctor at the Reflex Clinic, a Mongolian woman who spoke English with a German accent (and had been trained in German medical schools, according to the certificates on her wall). She  did another test instead (I think electroneurography). She also pointed out that Emerson had scoliosis and recommended that we go to a Russian spine specialist about that as soon as possible. She attributed Emerson’s knee and elbow issues to the scoliosis and to being in poor shape overall, but that didn’t make sense to either of us.

After this, Emerson had the endoscopy and ultrasound, which didn’t reveal anything remarkable, and then when they started having more problems with dizziness, we saw an ENT doctor recommended during our follow-up with the gastroenterologist. When we went in for that appointment, we needed to get a PCR test the day before in order to enter the hospital (new Covid protocol), so we went during Emerson’s fall break, because they had already missed almost four days of school between all the appointments. The ENT prescribed a couple of medications that temporarily relieved the dizziness, and also showed us some exercises to do at home, which we promptly forgot because I didn’t take notes.

Ultimately, we ended up with nothing significant in the way of a diagnosis, and at this point were so tired of making the round of specialists that Emerson wanted to give up on pursuing it. I had been reading as much as I could find on causes of chronic pain, dizziness, and fatigue in teens, and I kept coming up with fibromyalgia as the most likely cause. We have had a lot of conversations about whether or not it could be several discrete problems, but every time we go back to the fact that they all started around roughly the same time, and according to all the tests Emerson has had, they are basically otherwise healthy. We had a few good laughs about that one. “You’re perfectly healthy! Besides the pain in your legs, back, neck, and arms. And your stomach pain, headaches, dizziness, memory problems, and fatigue. Perfectly healthy!”

We don’t feel up to pursuing whether fibromyalgia is known or recognized in Mongolia, because we are starting on dealing with the scoliosis, and we feel like that is enough. I have never been very good at making doctor’s appointments anyway (except for Emerson’s, who always saw the doctor and dentist regularly even when I couldn’t). Here it seems more complicated because my Mongolian ability is not up to making these kind of phone calls. Even if I could ask to make an appointment, I probably wouldn’t understand the response. So I always have to ask, “Do you speak English?” first, and that feels like an added barrier to me.

It has been interesting to experience the Mongolian health system, and its similarities and differences to our US experiences. One big difference is that everything we’ve done so far has cost less than one month’s insurance premium in the US. It’s a lot by Mongolian standards, but not much by US. Another thing has been the constant bouncing around between specialists. I always had an HMO in the US and could only get a referral to a specialist after seeing my primary care doctor. Here, we keep saying it would be nice to have a doctor who would just look at the big picture, but that doesn’t seem to be the model. Instead, you get sent to a string of specialists who focus on specific problems. Which is fine, as long as those problems aren’t connected, which we now suspect they are.

One caveat is that we have been going to a private hospital. A friend at work told me that the private hospitals like to do lots of tests and don’t find anything wrong, so they can keep you coming back for more (definitely our experience), while the public hospital tries to find what’s wrong with you so that you don’t come back again. That would probably be our next step, getting help to go to the public hospital (they’re very unlikely to speak English, so we’d need someone to help us navigate and translate).

Emerson is kind of over trying to get a medical diagnosis right now, though. We will try again, because getting a fibromyalgia diagnosis, if that’s indeed what it is, would probably help for school. And if it’s not fibromyalgia but something else, we’d like to know. But since this is their last year of PE, they feel like they just have to survive it, and the symptoms aren’t debilitating enough to cause them to miss school. They experience brain fog on a regular basis, and the forgetfulness, inhibited verbal skills, and difficulty concentrating have an impact in school that may need to be addressed eventually. But for now, we are both doctored out.

A number of things have come up in our conversations about all of this. One of them is that the causes of whatever is going on with Emerson seem to be linked to our move to Mongolia. The year of going to school online from 5 pm to midnight didn’t help, nor the moving three times within a year. We talk about whether coming back to Mongolia might have been a mistake, and I am very open about going back to the US if the health problems escalate. If these problems had cropped up while we were still in the US, I probably would have reassessed everything. But they only started once we were here.

We are going back to the US to get a better evaluation of their developmental and learning disabilities, and I will try to take them to a holistic health practitioner as well. We will probably stay in Mongolia, though, because Emerson is tired of moving (as am I), and we are working on ways of managing their symptoms that we can do at home. We also feel like having a routine is important and disrupting the routine by moving yet again could make everything worse. As Emerson says, “We’re all moved in now.”

We are also continuing to look for other explanations for the health problems, but the more Emerson learns about fibromyalgia, the more they recognize what is going on in their body. There is also a family history; my mother had fibromyalgia, which she only recognized in her late 60s after reading several articles about it. At the time it was considered a psychosomatic illness, and my mother was often labeled a hypochondriac by her doctors, though in hindsight it’s far more likely that she was really just a woman. Even my father forgot that she was diagnosed with heart disease, and I had to remind him that she needed to see a cardiologist.

That is the other thing Emerson is preparing for: gaslighting and disbelief. They already get a fair amount because they talk openly about their ADHD and autism with friends. ADHD is more acceptable, but they get a lot of “feedback” from friends that they can’t possibly be autistic because they are funny, social, intelligent, etc. Our favorite is a friend who is clearly autistic himself yet who is the most adamant about Emerson being “normal.”

Emerson has also been talking with people at school, including the PE teacher, about their physical symptoms. The PE teacher says Emerson just needs more exercise. What we’ve been reading is that yes, certain exercises are beneficial (especially swimming, yoga, and walking), but excessive exercise of the wrong kind can trigger severe episodes. That’s what was happening with the football, and later with the badminton as well. They have a swimming unit coming up (the school has a pool), and they are going to ask if they can ease into it because the last time they swam laps was in 7th grade.

So, while I am on break for the next couple of weeks, I’m going to be reading as much as I can about fibromyalgia and continuing to search for any other explanation that makes sense. We joke now that Emerson got all the best genes. Maybe in the spring we’ll start another round of doctor appointments, and maybe the Russian spine clinic we are going to tomorrow will have some ideas as well. From what I understand, they mainly do physical therapy or “kinesitherapy.” As long as they don’t try to get Emerson bench pressing 50 kg right away, it might help with other things, too.

5 thoughts on “Adventures in healthcare

  1. After reading “Unwell Women, Misdiagnosis and Myth in a Man-made World” I will sent it along, if it has important information.
    Wishing you and Emerson a healthier 2022.

    Liked by 1 person

    1. Thanks for the recommendation! I learned a lot while caring for my mom, that’s for sure (it reaffirmed the gender studies courses I took in college and grad school). And also from learning about the gender biases in studies of autism and ADHD. I’m glad someone wrote this book.

      Like

  2. Hi Jericho – good luck to you and Emerson on this adventure with health care. Sounds very frustrating. Reach out if you ever want to bounce ideas. Hang in there!

    Liked by 1 person

Leave a Reply to Janet Pearlman Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.