Sunday, November 21, 2010

A Medical Mystery

For the past few months, I have been troubled by an array of odd symptoms and even odder medical advice. It all started the day my plane landed back in NJ after my first ten months in Indonesia. I noticed that the right side of my body sometimes felt very strange - a little bit numb, some tingling sensations - and felt colder than the left side of my body. And then the left side of my mouth started drooping! Alarmed, I went to see a doctor at home who ended up sending me for an MRI to rule out the possibility of MS. The MRI came back normal and the doctor concluded my symptoms must be caused by stress. This seemed to be a cop out answer to me since there was nothing in my life that I was feeling particularly stressed about. But in any event, my symptoms lessened and I returned to Indonesia feeling relatively fine.

However, by the beginning of October I was forced to acknowledge that I really wasn't fine. The odd sensations and mouth drooping were back, I felt unusually tired and lightheaded at the end of the day, I was having trouble gripping things in my right hand and, most disturbingly, there was a period of two to three days when I experienced really bad headaches that made my head feel like it was going to explode. These shooting pains in my head scared me enough to confide in Ingrid and seek out a doctor in Yogya. Ingrid did some research and took me to a doctor that several people had recommended.

Unfortunately, this doctor in Yogya turned out to be a bit wacky. His initial assessment of me was done through iris imaging. We looked at pictures of my eyes on a TV screen and he told us how spots on the iris correlated to organs of my body. My heart and lungs were fine but he mentioned in passing that I have a dirty left ovary. I'm sorry, what? A dirty left ovary?? But I quickly forgot about this as he announced his provisional diagnosis. According to him, I had a 'viral infection on a nerve in the brain'. Yikes! A brain infection?? And he can tell this by looking at pictures of my eyes? I was doubtful, but he ordered some blood work done and I figured a blood test would probably be a more reliable measure.

So the next day Ingrid and I went back to see him about the results of the blood test. He glanced at the paper we handed him from the lab and he announced that I have rubella. Really? I knew I had been vaccinated against rubella as a child and I didn't have a rash so this struck me as odd, but perhaps there was an Indonesian strand of the virus that I did not have immunity against. What do I know; I'm certainly not a doctor. Anyway, he prescribed two different medications, 6 to 12 rounds of physiotherapy, a detoxifying ionic foot bath (more on that in a minute) and last but not least he wanted me to wear a cervical collar for a month to put my facial muscles back in place. A cervical collar!! I asked him many questions but I could tell he was getting impatient. Ingrid translated that he felt like he was giving a lecture. He ended our session by saying that if I had any more questions I should just Google them. I promised myself I would do just that as soon as I got home, but first there was the experience of the ionic foot bath.

The ionic foot bath consisted of a tub of cold water with some sort of metal device that was plugged into a machine. The guy in charge (the attendant, the technician?) explained that the impurities from my body would float out of my feet and collect on the surface of the water as a layer of scum. Well, those weren't his exact words but that was the idea. If the scum formed one circle that meant I was relatively healthy. If the scum formed separate circles, it meant there was a problem somewhere. I peered into the tub; three distinct circles had formed. The guy looked at me sadly and shook his head. He told me the best thing to do in my case was to pray. Then he held up a worn copy of an English language book entitled 'Alone with God' and asked me if I wanted to read it. I politely declined and high tailed it out of there with Ingrid. I'm not saying prayer won't help, but it's not exactly what I wanted to hear at the doctor's office!

Back in my room, I Googled 'rubella' and found out that the blood work I had gotten done tested positive for the presence of IgG rubella antibodies, which should be present since I was vaccinated. I had tested negative for IgM rubella antibodies, which would have indicated that I currently had the virus. I sat there dumbfounded by the idea that the doctor I had gone to see had misinterpreted a simple blood test like this. On the spot I discounted everything he said to me - which to be honest was kind of hard to swallow anyway - and wrote to my RELO supervisors to see what I should do next. They suggested I fly to Jakarta to see a more reputable doctor at the International SOS Clinic.

On the day of my flight to Jakarta I found out that the neurologist I was scheduled to see had to cancel because of an emergency surgery. At the last minute RELO was able to get me another appointment with another neurologist at a Jakarta hospital. This doctor listened to what I had to say, did a few physical tests and told me I had migraines. Now, migraines sounded much more plausible than rubella but it still didn't ring true for me. I had been experiencing all these weird symptoms for over three months and only had one bout of bad headaches. And there was no aura or sensitivity to light or noise or any of the classic other migraine symptoms. I also didn't care for his recommendation of avoiding cheese, chocolate, coffee, citrus and cola. No cheese?? That's a horrible, horrible thing to forbid a girl who spent her twenties in a country famous for its cheese and who was cheese deprived for the entire 10 months she spent in Gorontalo.

To get a second opinion, I booked another appointment with the SOS doctor that I was originally supposed to go see. Of the three doctors I saw, Dr. Amanda did the most thorough testing and questioning. In fact she was so thorough that she sent me to get more extensive blood work done, an EEG and two evoked potentials tests called VEP and SSEP. The SSEP test was horribly painful. My body was hooked up to all sorts of electrodes and tortured with a vibrating current. It was most painful in my feet.

When the lab doctor wordlessly handed me her report at the end of the session, all I saw where the following words in bold type on the top of the page: Diagnosis: Multiple Sclerosis. At first I was stunned. Oh no!! And then I was angry. Who does that??? Who hands somebody a diagnosis of MS without saying a word about it?? It was shocking and I spent the taxi ride back to Jackie's quietly contemplating my fate and calling my parents. By the time I got back to the apartment I was visibly upset when I told the other girls. But Megan, to whom I will be forever grateful, calmed me down and explained that this was probably just a bad translation. A better wording would have been something like this: Reason for Test: Possibility of Multiple Sclerosis. Megan also pointed to the conclusion section of the report which said nothing about MS and just stated that the test results were compatible with sensory neuropathy in both lower extremities. What did that mean? Well, I had to wait another week or so before I could go back for a follow up appointment with Dr. Amanda.

When I finally got to sit down again with Dr. Amanda, I learned that I have a calcium deficiency. I had grown up knowing that I should drink milk for strong bones but I never realized before or had forgotten that calcium ions transmit messages from one nerve to the next. My decreased level of calcium was slowing these transmissions and causing nerve pain! Dr. Amanda speculates that I depleted my calcium stores living in Gorontalo where I pretty much involuntarily eliminated milk, cheese and broccoli from my diet. Never underestimate the importance of cheese! No wonder I craved pizza practically every time I left Gorontalo. My body was literally crying out for it. To fix this, Dr. Amanda prescribed me some calcium/vitamin D supplements and B12 supplements for good measure. I also asked her if there were any specific foods I should be eating as well, thinking she might say something like milk or cheese. But instead she replied, "Bone." Bone?!?! Bone has never been a diet staple in the part of the world where I'm from. She clarified by explaining that those little tiny fish that Indonesians dry and salt are a very good source of calcium. Right. Dried whole fish. Sounds yummy!

I tried the dried fish one night with some nasi goreng. They tasted just like bacon!
After months of worrying about what could be wrong with me, I'm relieved to find out it's something as simple and treatable as a calcium deficiency. I'm so glad it's not MS or migraines or a 'brain infection'. I just need to eat more cheese...and bone!


  1. Wow! That's quite the saga! I'm sorry you had the run around with the doctors. I've heard similar stories of people trying to get diagnoses in Tajikistan. Glad you're in a place now where you can eat milk and cheese!

  2. Thank goodness Jules! Must have been so scary, so sorry you had to go through all that!