Two days ago, on Friday January 24, I was a volunteer patient again. The group was smaller this time and the approach was different. The instructor was a female neurology resident. Two days previously, it was a male neurology resident. Their styles were very different but I learned something from both of them.

This time, instead of deciding to ask questions based on the clinical exam, they started off with having me tell my history and then they asked additional questions. They arrived at the clinical diagnosis of multiple sclerosis in five minutes just by listening to me and asking a few key questions. Then they practised their assessment of the cranial nerves with me as a patient. I encouraged them to practise assessing the corneal reflex and the gag reflex so they would feel comfortable performing them. I also had a chance to make sure that they knew that checking the gag reflex is not an assessment of swallowing. So, if they are in a hospital with an old-school attending physician, they will have that piece of information.  (At least, I can hope that they will remember it. The neurology resident was surprised that I hadn’t been seen by a speech-language pathologist while in hospital the first time. I told her that I had requested a swallowing assessment but that still requires a referral from the attending physician, and that didn’t happen. I let them know that all I got was a resident coming into my room to check my gag reflex. There was no note or documentation about that ‘assessment’ in my chart.)

The first group didn’t consider an MS diagnosis at all because they were focused on my cranial nerves and didn’t ask me any general questions about any other symptoms. The neurology resident knew very quickly that the trigeminal neuralgia was part of the picture but he didn’t look beyond that. So, he was surprised about the MS as I show no other evidence of it. I hope he learned something from the day.

What did I learn from these two sessions? I learned that I do not have a sensitive nasal reflex. I wondered if it might have something to do with my sinus surgery. That’s when the neurology resident in session #1 described to the class how that was possible since plastic surgeons smash your nose with a hammer. I told him that wasn’t how surgery is done now. I told him there was no pain. He joked around about how effective Percoset was. So, if any students are reading this, please make sure that you get more current information about endoscopic sinus surgery and check out Dr. Amin Javer’s website . I had no pain after the surgery and needed no drugs at all. I was given a prescription for Tylenol 3s if necessary but it wasn’t.

[I also had no trigeminal nerve pain after the surgery for two months. While this seems to have struck local neurologists and neurosurgeons as highly ‘unusual’, I now believe it was because I was on prednisone for a short time pre and post surgery and that the infection was adding to the pain. Before the surgery I used to have tears streaming down my face from my right eye when eating. When the severe pain returned months later, I had no tears and have had none since.]

The most important thing I learned in this session was how important the history and interview was. Once the ‘objective’ testing is done and no symptoms are observed, the mind seems to close. The resident in session #1 had already unconsciously ruled out MS. I believe that’s what happened with the previous neurologists I saw. Once the mind is closed, it is very difficult to pry open.

One of the students in session #2 asked me an excellent question that is going to be the basis of a future blog post.

Today I got to be a volunteer patient at VGH.  The students were second-year medical students and they were learning about assessing cranial nerves. The neurology resident who was teaching the session figured out that I was there for trigeminal neuralgia when we observed a bit of a difference with my corneal reflex in my right eye. He surmised that I was post-rhizotomy. But he was surprised with the addition of the MS as I still don’t present like a person with MS — although, note that TN can be a significant symptom of MS and always should be ruled out with MRI.

I gave each of the 7 students a copy of my full MRI on CD plus a DVD with 3 movies on it: the movie that Dr. Perry made of me in Urgent Care at UBC hospital, the professional video made for the MS Society, and the one of my presentation at the MS Educational event.

I enjoyed doing it. They were smart, asked good questions and made good observations. The major limitation to this type of assessment is evaluating the function of the vagus nerve, the 10th cranial nerve. I had serious problems with my vagus nerve (lesion in left medulla) that were undetectable in my mouth and vocal quality but affected my whole gastrointestinal system.

I get to go and do it again on Friday.

In late November, I blogged about a film crew coming to my house to film me and my MS story. I had naively thought it would be done and edited quickly enough to be shown at the educational forum the following week but realized while we were filming that it would take longer than a few days.

Things have moved relatively quickly if you consider that we had to juggle schedules over the holiday season, and do edits, re-edits and approvals, etc. until we got to the place where we were all happy with the end product. Two days ago, I received the videos and I uploaded them to youtube last night.

The first one is what they call the ‘branded’ video as I mention the MS drug I’m taking, Tecfidera.

The second one is the ‘unbranded’ video. It has all the same info as the first one but just omits the parts where I mention Tecfidera or hold the packaging for it.

I am pleased with the final videos. I asked them if they could make me look beautiful and sound intelligent. I sure don’t look like I have MS, do I? I wonder how many other people are suffering from undiagnosed MS?

One of the great achievements this year was to have a pleasant and delicious Christmas dinner at home with Daniel. Last year I was in so much pain when eating and the year before I was also in pain. This was the first Christmas since 2010 that I was able to enjoy the food.

Since the rhizotomy 369 days ago, I have been able to do so many things that I couldn’t do the previous year. The neurosurgeon’s fellow told me that the pain would come back, and that the best case scenario would be to be pain-free for 3-5 years. There is nothing like a window of time like that to get you focused on some things that need to be done.

I think the one thing I am most pleased about is keeping a promise I made to my mom in 2010 when she was dying. I told her I would take care of Betty — her sister and my biological mother. I was able to accomplish that. I took care of her finances and things she needed at the facility where she lived. And when she died in April, I contacted my sisters and planned her funeral and burial. I asked Daniel to build her a casket as I wanted to have a green burial.

Betty had a Catholic service at St. Augustine’s and was buried at Mountain View Cemetery in the same plot as her father, Charles Edward Evans, who died in 1972. My brothers were the pallbearers and I was so pleased that Betty’s cousin Len Metcalfe came, along with his wife and his daughter. It meant a lot to me to have family there. We buried the ashes of Barbara, the middle sister, at the same time.

I have also been able to put together some details of the family history on the Evans side of the family that I didn’t have before, thanks to Len Metcalfe . We have been sharing photos and he has told me some stories about my grandfather and great-grandfather.

It was also important to me that the family not be forgotten, so I organized grave markers for Betty, her sister Barbara and Grandpa Evans. My sister Miriam has a flair for writing epitaphs. We worked on the concepts together and she refined them.

Other things that I accomplished that I would not have been able to do in 2012:

• speaking engagement at an educational event for MS, posted to YouTube

• fundraised $6775 for the MS Society and led my team who raised over $16,000

• donated significant historical family archives to the City of Vancouver Archives

• media exposure in a whole new area — MS and CCSVI

• my first-ever published op-ed piece in a major newspaper to raise awareness of trigeminal neuralgia and MS

• speaker on a patient panel workshop for UBC Health Care Communication’s 2013 Allies in Health on barriers to health care communication

• participated in the women’s WOW group at GF Strong Rehab Centre

• travelled to a facial pain conference in Richmond, Virginia

• visited Washington, DC and Long Island, NY to visit my sister

• went to New York City, saw a show on Broadway and had dinner in Greenwich Village

• traveled to Quebec for Daniel’s family reunion

• blogged my whole history of miscommunication and misdiagnoses in the health care system

• wrote letters to most of the doctors I have seen who misdiagnosed me or treated me poorly

• learned more about CCSVI and interviewed an amazing success story, Lori Batchelor

I can’t say it has been a great year although it looks pretty good when I itemize the things I did. But it certainly has been an interesting one. It is difficult to feel full joy and pleasure with my altered sensations and emotions. I have lost most friends, made a few new ones and Daniel and I are still together. That’s the greatest blessing after so much trauma.

My focus in the new year will need to be redefining my ‘purpose’. Why am I here? How can I learn to live with full joy in a different body?