It has been a most interesting week.

A week ago, I took advantage of a free coaching session offered by Sarah Ramsden . In that session we discussed things that were holding me back from doing everything I want to do while I can.  I told her about my fear of the pain of TN and the fact I had some small hints of pain over the past few months.

After that session, I started making some plans. I even considered booking a pleasure trip, maybe even to Hawaii as Daniel has never been there and I have been so strong and healthy, especially in the last 6 months or so. We started planning a small dinner party as doing that had always been a great source of pleasure for me — good food, good conversation, interesting people.

On Friday I went to work out at Hillcrest Community Centre, then went for a swim and a sauna. I was feeling great and determined to move on with my life, and put the fear behind me.

I was aware that I was regaining feeling in my face, sort of like freezing coming out after a dentist appointment. This has been happening for a while and I knew it was because the trigeminal nerve was healing after the rhizotomy. I believe that all the healing that is happening in my body has also led to the rapid healing of the nerve. I’ve had improved sensation in my feet and my GI problems are under control.

On Saturday, I went to the market, then in the afternoon had a productive meeting with Connie, my business partner. That evening, as Daniel and I were brushing our teeth before going to bed, I had a big pain through my face and up to my forehead. It felt “thin” but it was intense and I dropped to my knees.

I was OK for the day on Sunday, but at 11:00 while lying in bed, I had another big pain, similar to the one the day before but a bit more intense. I took 50 mg of Lyrica and went to sleep.

Monday and Tuesday were much the same — more pains and more drugs. I managed to keep my commitments to the Wahls Protocol support group that I facilitate. And I went to the bon voyage party at Heritage Hall for my neighbours, the Everitts. I’ll blog about that later. However, I was pretty dopey but pleased I could be there.

Wednesday, for Remembrance Day, we went to Victory Square with Team Jody. It was our first chance to see Wilson-Raybould after the cabinet appointment. While many of us looked exhausted from the campaign, she looked vibrant and happy. (If you are unfamiliar with this amazing woman, her wikipedia page is really informative.)

I had a big attack as we were running to catch the bus after the ceremony wrapped up. I stood at the doorway of the bus unable to move. The bus driver waited as my husband explained that I was in pain. After the worst passed, we got on the bus. I was sobbing. It was embarrassing.

Later that day we went to a Chor Leoni concert called “Brothers in Arms.” It was an exquisite performance and very moving. Afterwards, the vocalists mingled with the audience. I had a chance to introduce myself to the very kind retired neuroradiologist who sings bass in the choir. He was the first person to identify the multiple sclerosis and to confirm the visibility of the lesions causing me pain on the first MRI that I had . He remembered me and our correspondence. I wanted to meet him face-to-face and shake his hand as he was so kind and generous with his time.

As we tried to go to sleep, I had a bout of the most serious pain to date. It was wave after wave of intense pain through my forehead. I went to sit in the den for a while. I wrote an e-mail to my team in Winnipeg asking for help.

I’m very dopey and full of drugs right now. I had two bad bouts this morning. The first was in the kitchen as I ate my breakfast. I ended up sprawled on the floor wondering how I could keep going like this. And about 15 minutes later I went to pick up the mail. I had my camera with me, so I took a short clip after the pain had passed.

So, what do I do now? Maybe I need better drugs or a different drug? I’m getting close to the maximum daily recommendation. I have messages for help to all my team.

I was invited to speak in Portland at OHSU on August 3, 2015 about my experience in the health care system and the difficulties I encountered along the way. This was an enrichment week for 2nd year medical students at OHSU and attendance was voluntary.

The tech people at OHSU provided me with a link to my talk — it’s about an hour. Perhaps there will be an opportunity for me to do this in Vancouver. I’m not sure how long it will be available online. I hope there is a way to get a digital copy of the talk.

At the very end I talk about the lack of a swallowing assessment by swallowing experts in Vancouver but I do not name the hospital. I also go into a fair bit of detail about the errors that Dr. E. made in the initial consult report that coloured my whole stay in that hospital, although a senior internal medicine doctor had the opportunity to be a bit more inquisitive and wasn’t. I think Dr. E. demonstrated “anchoring bias”, “premature closure” and “confirmation bias”. In other words, he didn’t think when he evaluated me. (For more discussion on diagnostic errors, there is a great post here .) And it was likely compounded by the the neglect of the neurologist who failed to take my complaints seriously in the fall of 2011.

Marc Gosselin (radiologist) introduces me at about 3:00. I start at about 5:00 and go to 1:07:00.

The link below takes you to where you can see two screens — one of my powerpoint slides and the other of me in the classroom while I speak.

https://echo360ess.ohsu.edu:8443/ess/echo/presentation/accc0447-e32f-473c-bd66-d9149ac4f027?ec=true

This next link just shows you the powerpoint slides and you hear my voice only.

One of the concepts Dr. Gosselin wanted them to really understand was “diagnosis momentum” in my long journey to diagnosis. And he could not believe that we have a practising neurologist in Vancouver at VGH who cannot diagnose MS with an MRI!

I received great feedback from the students. One came up afterwards and told her own story of not being listened to before being diagnosed with a serious medical condition. And another female student wrote to me:

I am one of the second year medical students that came to your lecture today at OHSU. I just wanted to say thank you for coming to speak with us. I was so moved by your story–it is one that I will carry with me throughout my career.

We had a bit of fun while in Portland . . . for a future post!

I was invited to be one of the speakers at the BC Launch for Women Against MS, or WAMS. As 75% of people with MS are women, and Canada has the highest rate of MS in the world, MS is a disease of Canadian Women.

I invited our local federal Liberal candidate, Jody Wilson-Raybould , to attend and present the welcome letter from Joyce Murray, Member of Parliament for Vancouver Quadra, the riding where the event took place. The letter that Ms. Murray wrote was thoughtful and moving, as she had a personal connection to MS and has visited MS groups, including a visit with our Kitsilano Group.

All in all, it was a successful launch. Other speakers were Karimah Es Sabar, President and CEO, Centre for Drug Research & Development, and Dr. Cornelia Laule, WAMS grant recipient.

Dr. Laule brought all the researchers in attendance up on the stage with her. It was a really nice gesture as she described the important work they are all doing to help us.

I wore a few pieces of jewelry that represent hope that I put on as I got dressed. I had a ring from my mom, a teal bracelet from the Trigeminal Neuralgia Association of Canada (you can see it on my right wrist), starfish necklace and earrings from a special day with my husband, Daniel, and a pin in the front of my dress from the Evelyn Opal Society , who was one of the founders of the MS Society of Canada.

I also got a chance to reconnect with Sarah Le Huray and Lori Batchelor . I regret not getting a photo with Lori but Sarah was on the ball and came by to take a photo!

I’m pleased with how the evening went and I hope I get asked to speak again.

We got back home yesterday afternoon from Winnipeg. I’m feeling relieved but exhausted. I made a short video in the hospital a few hours after the surgery. I’ll just post it for now. This was on the evening of Tuesday, September 16, 2014.

I had so hoped I’d be able to post a few nice things before posting about my pain. I had a really good summer and even had the chance to go on a trip. I haven’t blogged about that yet. There has also been a huge and great surprise in my life that I will write about very soon.

Today started off as a really rough day. The trigeminal neuralgia started becoming more of a problem on August 28 with more shocks on my palate. I increased my medication of Lyrica (75 mg bid since April 24) up by another 50 mg on the 29th. By September 1, I was at 125 mg bid, then next day 150 mg bid, then 200 mg bid on September 5.  I thought this would be enough for at least a while but I had tons of electricity in my face this morning, so I upped it another 50. It took me over an hour to eat breakfast. I took the video above when I was half way through breakfast.

Every time I pause/stop speaking in the video, it’s because I have electric shocks in my face and I’m holding steady, hoping they don’t get worse or travel farther up my face.

Things have settled a bit now. I was able to have a cup of tea and brush my teeth. I sat outside a bit for my Vitamin D. And now I wait to hear back from Winnipeg. I am approaching the maximum daily dosage for Lyrica. I’m allergic to two other drugs that are most effective for TN.

I am sure that this is simply a healing of the trigeminal nerve since the last rhizotomy on December 27, 2012. The problem area in my brainstem (pons) has not healed adequately to prevent the pain. What happens is that the signals from the parts of the body served by the trigeminal nerve misinterpret normal sensations as pain sensations. For me, unfortunately, the most painful things I do are eating and sometimes talking. And when it’s really bad, even swallowing saliva can elicit the pain. Do you know how many times a day you swallow?

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?

On Wednesday evening, I went out to Surrey for an educational forum on “Current and Emerging Therapies” hosted by the MS Society. The organizers told me they were expecting about 50 people but were surprised that 147 had registered. I jokingly told them that if they had put my name on the poster, we might have been able to draw more! I’m not a neurologist but I think there are many of us in the MS Community who have very interesting stories and many of us have a lot of knowledge. One thing that this new MS community doesn’t really know about me is that I know a lot of people.

Some of my friends and supporters came to the event and I appreciated that a lot. One of them volunteered her husband to come and film my presentation, and I am so thrilled that he did because it has been a long time since I’ve spoken publicly about anything. I was pretty relaxed seeing the warm and friendly faces in the room.

The hardest part of putting the presentation together was keeping it to 10 minutes. My story is complex and there are a lot of details. But now that I have the arc of a basic story, I can adjust it to different audiences. One day I hope to speak to a room of doctors and/or medical students to encourage them to maintain their curiosity and question everything and everyone, even if that person is a well-established specialist.

I got really good feedback from people and the most special feedback was from one of my MS mentors who told me that my presentation was much better than the neurologist’s. The difference, of course, was that I was telling my story and tried to stay optimistic. The neurologist gave information on drugs. Most of the information she gave is widely available online, and most of us are keeping up-to-date. However, as I was there, I enjoyed hearing a summary.

I hope I can get a chance to do this again.

Ask the Doctor Series with Ken Casey from TNA Admin

I first watched this video right after it was released on the TNA/Facial Pain website in 2010. At that time, I thought that the TN I had was likely from the most common reason, a blood vessel rubbing on the root of the trigeminal nerve, just outside the brainstem. I had been assessed by a neurologist and many doctors. While I didn’t feel completely ‘well’, I naively thought that signs of MS would have been picked up if I had it. I wrote everything off as getting ‘old’.

This video prepared me for possibility that I might be considered ‘crazy’ if I explained the pain/symptoms in detail. When I was admitted to the hospital in December, 2011, the gastroenterologist asked me (with quite an abrasive tone) what I was doing there. I remember this so clearly — I said, “I have atypical GERD and idiopathic or atypical facial pain, and being a middle-aged woman, I guess that makes me ‘crazy’.” I probably shouldn’t have said that as he seemed to go out of his way to prove that I was.

The talk is really long but is packed full of valuable information that all doctors should learn. I learned about the term and concept of ‘allodynia’ where things that are not painful become painful. That’s what happened to me when foods that were slightly tart or spicy became painful, and even to the point where drinking water was painful. Taking medications orally also became incredibly painful.

Dr. Casey is the co-author of the book I’ve written about, “Striking Back” , that really helps people with facial pain become self-advocates. At 39:00 he makes a pitch for all of us to become self-advocates as he knew many of us would encounter problems with being heard. At 41:34 he talks about how people with ‘atypical’ or ‘idiopathic’ facial pain are written off as ‘nuts’. He cites a neurology textbook as being a perpetrator of this continuing misinformation, “Merritt’s Textbook of Neurology” that is in use for medical training to this day. It’s really disheartening to see how long it takes to shift medical knowledge.

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:

Another day of oatmeal. Clean hair and body. Still some pain. Not killer pain but bothersome.