Since receiving the MRI report and the images, I have been immersed in reading and learning. There is a lesion on the left medulla, in the brainstem. This is the area of the brain where the autonomic nervous system is found.

I pulled this from a website: the Autonomic Nervous System controls digestive functions such as: secretion of saliva from the salivary glands, peristalsis to move food along the digestive tract, gastric acid production in the stomach, sphincter open and closing, hormone release from glands in the digestive system, and the storing energy in the form of fat.

In the spring of 2011, I started having more difficulty with reflux, especially after a large meal in the evening. I noticed I was having more trouble with fats. I made a lot of changes to my diet and eliminated dairy, sugars and alcohol.

Daniel and I went to France in the fall. My GP put me on a protein pump inhibitor to help with reflux. It didn’t help. I was also having trigeminal nerve pain. In Paris, I had a gastroscopy that identified a hiatal hernia and gastritis. They put me on a motility drug called domperidone that didn’t seem to help much either. I became seriously constipated.

In the third week of the trip, I was in such misery, unable to sleep or eat that I woke Daniel up and begged him to take me home. “There’s something wrong with my body,” I cried.

After we arrived home, we went to see my GP right away who threw some sample packages of another protein pump inhibitor at me along with an order for a gall bladder ultrasound. She didn’t seem to have much time for me. The next day I learned it would take six weeks to get the ultrasound. Too long. I was about 120 pounds and I wasn’t eating much, so I knew I needed some help. I went to False Creek Healthcare and had an abdominal ultrasound. They couldn’t find anything. I booked an appointment with a gastroenterologist that would take a few days.  I went to VGH emergency as I wanted to get help to prevent a hospital admission because I knew that’s the direction I was headed in.

At VGH, they told me that there was nothing wrong with me that they could see and that my best bet was to see the gastroenterologist. That was a couple of days away. So, I did. He put me on a protocol for ‘atypical gastroesophageal reflux’ that involved Nexium and nortriptyline. He told me it would take a long time to get better. I was to eat what I could tolerate.

I knew I couldn’t work with a GP who wasn’t prepared to help me more. So, Daniel went to his GP and came home to tell me that he was willing to take me on. I was relieved. At our first meeting, I was hopeful. I told him that my situation was complicated. He assured me he had seen people with my problems before. I was optimistic that we would get to the bottom of things.

What wasn’t supposed to happen was for me to get worse. Which I did. Within a week I regurgitated my dinner — food that I had swallowed worked its way back up into my mouth. I remember it was cous cous and spinach. I really knew then that something was really wrong.

At my next follow-up with the new GP, he started to suggest that I was losing weight because I was depressed from my (adoptive) mother’s death. I missed her, I was sad at losing her but I was not depressed. I started having trouble swallowing pills. Both the GP and the neurologist suggested that I open the pills and sprinkle them on applesauce to get it down. I tried it and screamed in pain. I used xylocaine to numb the trigger points in my mouth and still screamed with pain.

My GP offered to give me drugs for depression. Then he said he had drugs to help me with stress. He told me I wasn’t open-minded when I shook my head. I tried to explain to him that I had a lot of pain. I saw the neurologist. Again, he told me to open the pills and sprinkle them on applesauce. This time he actually demonstrated the activity to me as though I hadn’t been bright enough to understand. A couple of days later, on November 24, he gave me botox in my face to help with the pain.

I was focused on the hiatal hernia as it was the only thing I knew for certain that was ‘wrong’ with my gastrointestinal tract. I also knew that stress was counterproductive to good digestion and I was really stressed. I was sleeping sitting up on the couch in the den. I was eating meals alone because of the pain. And I had to be very careful with what I ate.  I could taste pills after swallowing them. When I got pills stuck, I had to push them down by eating a banana. I tried so hard to keep taking the medications as there was supposed to be some hope that I would get ‘better’ but it made no sense to me. On November 15, the GP said he had never had such an unusual case before as all my blood tests were normal. I stopped seeing him then because I knew had decided I was crazy and all he could talk about was giving me drugs or seeing a psychiatrist. I stopped trying to get pills down on November 19 as it was so stressful to try.

During all of this, I had my other team supporting me — acupuncture, NIS, visceral manipulation, chiropractic, psychology. I was working on relaxation and mindfulness.  I couldn’t move my bowels. I went to a colonic hydrotherapist who helped me remove a huge fecal blockage. That was on November 30.

I saw the gastroenterologist on December 6. He asked me what I thought the problem was. I told him I thought it was motility. I also told him that my GP thought I had a psychological or psychiatric problem. I told him that I knew there was something wrong with me. I asked him about MS and he shook his head. Then he proceeded to book me for an abdominal CT scan and colonoscopy. He told me to keep track of my weight but he didn’t tell me what to do with it. I no longer had a GP and I was at a loss. I knew I didn’t have cancer but that seemed to be all anybody was looking for.

I saw a naturopath on December 15 who encouraged me to go through with the scheduled abdominal CT on December 22. The contrast solution really upset my stomach and I was again in misery.

I resigned myself to the fact that there was nobody to help me. I was preparing to die.

I’ve spent a lot of time this past week reading all about MS and autoimmune diseases. We’ll never know for sure what triggers an autoimmune response, as they can be triggered by viral or bacterial infections, among other thngs. So, it is possible that this chronic sinus infection was the trigger. And it is also possible that it was something else all together.

When I described the neck pain and low grade fever I experienced last July, it appears that this was likely an ‘attack’ of MS. How many I’ve had is unclear. What needs to happen next is preventing further attacks.

I contacted my GP and managed to get in to see her on Tuesday. I prepared all the info she needed to refer me to the MS clinic at UBC. I did my research and requested a neurologist that has good ratings on-line and is also well regarded by medical colleagues.

I am fortunate that I have my ‘team’ assembled and working with me on this next step in my health journey.

Last week I hunted down a report from a neurologist I saw in 2005 for facial numbness. I had forgotten about it until recently when I came across a letter I wrote to my GP at that time who told me not to see the neurologist after the numbness went away, so that people who really needed to see a neurologist could have his valuable time. “I decided to go anyway because I know that the onset of progressive neurological conditions can be subtle,” I wrote to her. The numbness lasted three weeks and was on the left side of my face. It got me wondering . . .

The neurology report said that the objective neurologic exam was normal. “I doubt very much that this is related to demyelinating disease. At this point in time I reassured her with regards to the above.”

I told the doctors in the hospital in January that my feet were numb. I’ve had some numbness in my hands and feet for quite a while. I figured that it could have been from malnutrition. Or from the heavy duty medications I had been on for pain.

I received the CD of my MRI two days ago and the radiology report today.

There is no real change from the previous one and the images continue to suggest multiple sclerosis. There are a few more steps to take before a definitive diagnosis can be made.

There is one positive and that is that MS isn’t as much of an ‘orphan’ disorder as trigeminal neuralgia is and the support groups will be a bit more active.

A potential negative — among the many others — is more nerve pain or neuralgia.

I made another appointment to see Dr. Javer as I was concerned about my ongoing congestion. It seemed to be taking too long to get past it after the recent cold.

There were two ENTs observing and helping out. One was from Kenya, the other from Saudi Arabia. Both of them are hoping to do the specialty training on a fellowship with Dr. Javer.

Dr. Javer noticed thick mucous in my maxillary sinus. He suctioned what he could reach with the scope and took a sample to send to the lab. There was additional thick mucous in the sinus ‘above the teeth’, the site of the cyst and chronic infection. He rinsed the sinus out twice, then put in additional antibiotics.

I’ll be contacted next week when the results come back from the lab if we need to do more to fight an infection.

Have I mentioned how fortunate I am to have a caring specialist like Dr. Javer?