We have had gorgeous weather the past few days after seemingly endless rain. It was nice for Vancouverites to have this weather for the Easter long weekend. Daniel and I went to Spanish Banks/Locarno Beach for a walk and I wanted to record the trip.

Whenever I came home to visit during my years at Purdue University/Marshfield Clinic, my dad would pick me up at the airport and we would drive around Point Grey so I could see this view again. I never get tired of it.

I planted some peas and beans in the garden. We’re having roast chicken for dinner. It smells delicious!

Dr. Perry gave me a copy of the video he took of me in Urgent Care at UBC Hospital. I think I had been evaluated by a lovely female neurologist who advocated for me to be admitted at UBC overnight as I had an appointment at the MS Clinic the next day. I recall her explaining to Dr. Perry about the size of the trigeminal nerve and where it originates in the brainstem. I relaxed a bit because I started to believe that I was being heard and my pain taken seriously. After she had finished her evaluation, Daniel was able to join me.

When Dr. Perry first came to see me, I asked him who he was as I thought he looked familiar. When he told me his name, I told him he had been my former MLA. Point Grey or Little Mountain , he asked. Point Grey, I responded. How cool was that for me with my interest in politics, being treated by my former MLA? I told him I was dating myself by remembering that.

After Daniel joined me, Dr. Perry asked if I would be willing to be videotaped. I had no problem with it as I have always loved learning and teaching. It is obvious that Dr. Perry is much the same way. It’s long but I have a significant pain early on. When I look at it, I give no real indication of how painful it was. Of course, by this time, I was already pretty drugged.

Thanks to my neighbour, Lyn, a brilliant computer science professor at SFU, for helping me convert the video into a format I could use.

If you are interested in knowing what “pain” looks like, I have pain at 0:43-0:48, 2:02-2:19, 4:54-5:06 and 7:44-8:00. I also noted that Dr. Perry was focused on twitches I had with my upper lip, likely because the French term for ‘trigeminal neuralgia’ is ‘tic douloureux’. Around this time, my ‘tics’ were other body responses, like stomping my left foot or flailing my right arm but you don’t see it in my face. There are a couple of times where I pause when I’m talking — pausing to let a wave of pain pass.

Four days later, on November 18, after Dilantin (phenytoin) by IV, this is how I was:

In early December, 2011, I was in my gastroenterologist’s office.  I told him that I was experiencing really bad constipation. I tried to explain to him that my bowel movements were not normal. I tried explaining to him that the poop did not drop down far enough to be expelled. I used the term ‘not on deck’ to try to explain it. (Of course, I now know what was going on was difficulty in peristalsis, likely from the lesion in my (medulla) brainstem.)

He asked me about my bowel routine. I looked at him and wondered what exactly he meant by that. I just used to go when I had to go, whenever that was, not usually every day. I hadn’t really given a ‘routine’ that much thought until I spent two weeks in France (late Sept – early Oct) without a bowel movement. After coming home, things did not improve as I had hoped or expected they would. I was distressed. I asked him about the possibility of MS because I had talked to my pediatrician friend who told me that doctors are trained to look for overall patterns that suggest systemic problems. He (pediatrician) had said that it was possible that a demyelinating disease could explain my GI problems and my facial pain. This GI doc shook his head and then ordered tests to look for cancer.

After my hospitalization later that month for severe weight loss and being given an interesting diagnosis of ‘functional dyspepsia’ I knew that I had been written off as ‘crazy’. I still knew there was something wrong with me and I suffered a lot for a few months after that. Things started to normalize by early March and I had found something that worked for me, thanks to my Persian friends at Yek O Yek.

The other major medical oversight was from neurologist #3 when I saw him on October 9, 2012. He told me that constipation has nothing to do with MS . A neurologist. Yes. A neurologist practising in the 21st century told me that. I knew he was wrong. Perhaps he should spend a bit more time on the internet as this information is widely available to you and me.

From a fact sheet on MS from canada.com

The type of symptoms depends on the location of the damage. Symptoms commonly include:

• bladder problems, such as urinary incontinence
• bowel problems, such as constipation
• cognitive problems (e.g., memory loss)
• difficulty walking
• dizziness and sensations of spinning
• extreme tiredness
• headache
• hearing loss
• itching
• mental health problems (e.g., depression)
• muscle stiffness or spasms
• numbness and tingling
• pain
• seizures
• sexual problems, such as reduced sensation, decrease in sex drive, and problems maintaining an erection
• speech and swallowing problems
• shaking
• vision problems

Before I go to sleep, I rip apart dried figs and put them in a bowl, then cover the figs with water and let them soak overnight. In the morning, the first thing I do is is eat the figs and drink the water. I usually have a bowel movement every day.

A few weeks ago at our Kits Self Help group, I brought up the idea of a logo. I am in another women’s group where I met a graphic designer and asked her if she would be interested in helping us. To my delight, she was eager to help us. So, I asked the group for some ideas/suggestions and we worked through a few of them. Our graphic designer was very patient with us as we went back and forth with ideas and concepts and came up with one that we approved at group on Friday.

So it’s official — our Kits Kruisers logo is simple but conveys the idea of us all moving forward for a cure for MS. One member jokingly said that he didn’t like it because there is no lift for his wheelchair. I took a closer look and told him there wasn’t even a door, so I couldn’t get in either! We laughed and moved on. We’ll see what we can do to get ‘swag’ for the walk.

It has been fun to keep track of our team’s progress. We are currently the #2 team in Vancouver .

I dropped by Yek O Yek yesterday to say ‘hi’ to Adam and wish him ‘Norooz Mobarak’. Every year he has to teach me how to say it. Over the years we have become friends with him and his wife, Homa. I get all sorts of ancient Persian wisdom when I shop there and learn how to manage my health with good food. With my oro-facial pain, I haven’t been able to enjoy a lot of the delicious food until recently. I bought some baba ghanoush yesterday, one of my favourite things they sell.

At this time of year, Adam and Homa put up traditional things on a table near the window in the store. The goldfish in water represent life within life and leaving the sign of Pisces, the sprouts represent rebirth and growth. (I got that from Wikipedia, so it may be simplistic or not quite their tradition.)

Yek O Yek is “101” in Farsi. They are located on the east side of Main Street between 14th and 15th. I buy organic eggs, Persian pistachios, goat cheese, dried beans, figs and olives regularly, as well as bus tickets. Whenever I walk by, I look in and wave or stop by to say ‘hi’. I love my neighbourhood.

I took a look at Yelp to see what people were saying about Yek O Yek. This posting from Andrew F. says it all and so much better than I could.

For just a second let’s forget talking about all the little specific details about this store. In fact, for a second let’s forget that the store even exists. I want to talk about the owner of Yek O Yek, a proprietor worth visiting just to say hello.

In the short half year I was living in this hipper than thou neighbourhood I discovered quite a few amazing stores that I frequented often (Happy Bats, Toshi Sushi, Slickety Jim’s, etc.) but none left the impression of Yek O Yek. The moment I stepped in and was greeted by the owner I felt a connection that went beyond customer and proprietor. This was a “welcome to my home, please stay a while” kind of feeling. The owner is a persian man with a smile of gold and gleaming eyes. He loves to talk about his culture and food. He will turn you on to his turkish delights, which I had avoided up until that point because of condescending words like “soapy” and “awful tasting”. I don’t know what these people were trying, but it sure wasn’t the delectable rose and lemon flavors I was savoring! No matter if it’s a quick buy or a long sampling affair he always gives a genuine smile that says “I look forward to your next visit”, and I return with a smile that says “I will be back sooner than later”.

I always buy from the great deli counter selection. Their baba ganouj is the best I have tried in the city with just the right kick of smoky and mint aromas. Their persian olive, walnut, and pomegranate tapenade is such a unique combination of contrasting flavors that work all too well. The tabouleh salad, dolmades, falafels, feta, halvah, etc. There are so many amazing treats to try that this already too long review would become unbearable.

This is the kind of store I had been looking so long for. The kind of store that shouts “this is MY neighbourhood!” because you know you have found a most unique place that does not exist elsewhere in the city. Most importantly though, talk to the owner and you will see his insta-charm personality is as big as the nan-e barbari he sells.

I met with a doctor at my GP’s office yesterday as my regular doctor was away. He read the reports to me and asked me how I was feeling. I asked him if he meant physically, emotionally, or psychologically. He opted for the safe path and asked about ‘physically’. I told him that the numbness was persisting in my hands and feet. I have new pain on the top of my left toe. It’s not too bad — nothing like the pain I had in my face — but it has to be neurological.

I got copies of the reports so I could process them. The first one is MRI of the head.

A moderate burden of supra and infratentorial disease is demonstrated with classic juxtacortical, periventricular, and callosal lesions demonstrated. Many lesions demonstrate a classic perivenular morphology as well as black hole type morphology. No definite new lesion is identified.

Have you ever dictated reports? I did when I worked in the U.S. You fall into patterns and tend to repeat particular words and phrases. I’ll do my best to put into everyday language.

There are several lesions (not just a few but not a whole lot) in the upper part of the brain and the lower part of the brain. They are in the typical places found in MS, right next to the cortex (grey matter), around the ventricles and in the corpus callosum. Many of the lesions are typical shapes of MS lesions, around the veins as well as black holes. Black holes indicate dead nerve cells/severe tissue destruction. No new lesion is identified.

They say that the volume of my brain is within normal limits for a person my age. Brain atrophy is common with advanced/severe MS, so that’s encouraging. They talk about one lesion at the top of my spinal cord next to my brainstem that was not in the field of view in the earlier MRI. They call it the cervicomedullary junction/C1. There is no mention about the size of it or whether it’s more on the left or the right. I will want my neurologist to review the images with me when I see him next.

The report on my spinal cord says that the only demyelinating lesion is at the top (C1) at the junction with my brainstem. They focus more on degenerative disc disease in two other places down my spine.

Generally, the results are positive and the disease seems to be relatively slow in progression. If I can just stay out of pain, I’ll be OK.

I received the TNA Facial Pain Association News Wire this morning with a reprint of an article from Saturday’s New York Times Sunday Review. “The Gender Gap in Pain” by Laurie Edwards highlights the problem:

In 2011, the Institute of Medicine published a report on the public health impact of chronic pain, called “Relieving Pain in America.” It found that not only did women appear to suffer more from pain, but that women’s reports of pain were more likely to be dismissed.

This is a serious problem, because pain is subjective and self-reported, and diagnosis and treatment depend on the assumption that the person reporting symptoms is beyond doubt.

I printed the article into a pdf that you can download and read.

Tomorrow I will be going into my GP’s office to get the results of my recent full MRI. They received it before I did. I’m not sure if they get the images or just the radiology report. It does assure me that my copy will be in the mail shortly.

I spent some time reviewing my MRI images from July. These are the images that the ordering neurologist (neurologist #3) didn’t bother to look at. Having studied the brain and worked with people who have had strokes and brain injuries, I was able to identify some of the classic lesions seen in MS easily.

Lesions in the corpus callosum are one of the classic signs of MS. The corpus callosum is a very thick band of myelinated nerve fibers that connects both hemispheres of the brain. You can see the slice through the corpus callosum above the black arc (lateral ventricle)  in the middle of my head. The imaging technique used for this view shows lesions as dark spots.

This picture is an axial view, meaning that it’s a slice of my brain from front to back, with the nose on top and back of my head at the bottom. Lesions in the cerebellum are also classic in MS. The cerebellum is the lower part of the brain behind the brainstem and is responsible for coordination of movement. The imaging technique used for this image shows the lesions as white spots.

This image is the same orientation as the one before but higher up in my brain. Again, the lesions are white. Lesions around the ventricles (large black curved spaces) are classic in MS. The ventricles are connected holes in the brain that contain cerebrospinal fluid.

I don’t know if you can imagine how hard it was for me to sit in neurologist #3’s office on October 9, 2012, as he told me that I didn’t have MS and that constipation has nothing to do with MS. I had looked at the images and he hadn’t. It is the height of arrogance to assume that the radiologists he works with don’t know what they’re talking about and not bother to look himself. Interesting to note how he can say one thing to my face “you don’t have MS”  and then write a report that states he has actually considered what the radiology report says.

“Her MR brain scan completed in July 2012 was reported to be consistent with a diagnosis of multiple sclerosis. . . The findings from the scan are surprising. She has never had any neurological deficit on examination and her presentation is most unusual.”

I guess if you only have deficits that are sensory (numbness/pain) or invisible (gastrointestinal), you need to have a neurologist who listens and believes you. I can only assume that he did not believe a word I said, probably even more likely after the reports from the hospital stay in December 2011/January 2012 came out with the gastroenterologist who made all the errors in my intake and said I had post-herpetic neuralgia (nerve pain after a case of shingles when I have never had shingles) and a conversion disorder.

As the graffiti in the Granville Skytrain station stated:

I haven’t written about the hospital stay in detail yet. I guess I need to.

I have put myself into the role of updating the group on our progress week to week. Last week, Lynn was ‘fundraiser of the week’. Over the course of the past week, our team moved into first place of all the teams in the province. Of the individual fundraisers in Vancouver, I was in second place and Lynn was in 8th place , although I did hear that she is on the verge of moving up into fifth place.

Our team goal is to raise $6,000 this year. I enjoy working with a team of people who do what they can to help others.

I wrote an article for the Courier a few weeks ago hoping they would help us promote the walk and bring in donations. We haven’t seen it yet. So, I’ll reprint it here.

MS can affect anyone

Did you know that you can be diagnosed with MS at any age? While most people are diagnosed with MS as young adults, you could still be diagnosed at the age of 7 or 70. Regardless of when you are diagnosed, the cause of MS is still unknown and there is no cure. Although MS is not a terminal disease, it is a disease that can be progressive and disabling.

The Kitsilano Self Help Group members come from several different backgrounds and professional groups, including a nursing instructor, genealogist, librarian, flight attendant, fitness instructor, pilot, dancer, dragon boat racer, speech-language pathologist, and a meteorological observer. We are sisters, brothers, mothers, fathers, spouses, grandparents and friends. We are part of many communities.

At our weekly group meetings, we share our stories and learn tips on mobility aids, new treatments, transportation, travelling and entertainment. Occasionally, we invite guest speakers to talk to us about other ways to manage symptoms and the disease. Recently, a doctor of Traditional Chinese Medicine and an acupuncturist came to talk to us about managing MS. The acupuncturist’s husband also had MS and she was able to give the group some insights on working in partnership with a spouse.

Regular laughter and camaraderie are important parts of the self-help group. Most of us look forward to the meeting where we have made new friends and feel less alone. The group is now gearing up for the MS Walk on April 28, and has set a fundraising goal of $6,000. We are committed to helping find a cure and envision a day where no more people are diagnosed with MS.

Please help us by sponsoring our group online at:
goo.gl/241mr or contact us at [email protected] or phone Jennifer Sweeney at 604-874-0797.

The MS Society provides support to the 55,000-75,000 people in Canada living with multiple sclerosis, the most common neurological disease of young adults. Every day, three more people in Canada are diagnosed with MS. The Kitsilano Self-Help Group meets on Friday afternoons at Kitsilano Community Centre.

Did you know…
• Canadians have one of the highest rates of multiple sclerosis in the world.
• MS is the most common neurological disease affecting young adults in Canada.
• Every day, three more people in Canada are diagnosed with MS.
• Women are more than three times as likely to develop MS as men.
• MS can cause loss of balance, impaired speech, extreme fatigue, double vision and paralysis.
• MS was first identified and described by a French neurologist, Dr. Jean-Martin Charcot, in 1868.
• We don’t know what causes MS but researchers are closer to finding the answer.

Yesterday, Dr. Schmidt finished removing my leaky amalgam fillings in my upper left quadrant. Last week he did the lower right and two weeks before that, the lower left. He replaced them with state-of-the-art composites and ceramics. My teeth look great now. He also built the most remarkable brux guard for my lower teeth that has been crafted for me and can be adjusted as we do work on my teeth.

My friend Adam told me about Dr. Schmidt at Pacific Spirit Dental Centre . I am really grateful that he did. I have never met a dentist as committed to communicating and teaching in the way he does. All you have to do to get a sense of his commitment to dentistry is to look at the amount of valuable information on his website. After my first assessment last October, he sent a long e-mail describing what he saw and a recommended course of treatment for the long-term maintenance of my teeth. That was really amazing.

What really has made him stand out is his curiosity about my facial pain and the thought he put into it before the cause of my pain was diagnosed. By working through a differential diagnosis together, we both realized in early November that the pain was most likely from the MS and ‘somebody’ would need to look at the MRI closely in order to see it. That’s what happened after I was finally seen at the MS Clinic.

When you are in the office, sitting in the chair, Dr. Schmidt pulls up photos and x-rays of your teeth as you discuss procedures and plans. Having the visual tools is so valuable. While you are getting work done, they take photos to submit to your insurance company to help with your claim.

Dr. Schmidt has a great team of people in his office. They do their own lab work, so if you need a crown, they can do the whole procedure in one visit, instead of having you leave with a temporary crown and come back in to place a crown that is made at another facility. The admin people are really nice and helpful with any questions you have.

When I took this photo yesterday, I promised I would say nice things. It’s easy to say nice things when you feel grateful for thoughtful, kind and professional care.