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!

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.

The recent media frenzy around a study held at McMaster University included an excellent article on the issue published by the Vancouver Sun . I had joined a couple of facebook groups to learn more about CCSVI and I have now spoken to five people who have benefited from the procedure. I want to learn more and to try to understand what is going on in the brain. There are a lot of theories and thoughts about causes and treatments for MS. What makes logical sense to me is the concept of proper blood flow for a healthy brain. If I had impaired circulation in one of my limbs, it would be treated because there would be risk to the limb from swelling and inflammation. So why not look at the veins draining the head?

The Vancouver Sun article included a link to videos done by Lori and her husband showing the remarkable improvements she has had since her angioplasty over two years ago. When I saw these videos, I thought this is much more than a self-report of invisible symptoms. This woman has improved visibly and significantly when she wasn’t supposed to with a diagnosis of secondary progressive multiple sclerosis. The video of her first year ‘angioversary’ is remarkable because she is being evaluated by her neurologist who agrees that there is marked improvement.

I wanted to meet this woman. I asked some of my colleagues in a support group if they might be interested. So, on Friday, September 13, four of us sat down at a coffee shop and got to know more about Lori’s story and to see her in person.

Lori is really passionate about having this procedure available in Canada for all people suffering from CCSVI, or chronic cerebrospinal vascular insufficiency, as she believes it plays a role in multiple sclerosis and other degenerative brain conditions. She went to the Seattle location of Vascular Access Centers for her angioplasty. When describing the procedure, she said, “I found it exhilarating, not scary at all.”

She noticed improvements right away. That night, she was able to go to the bathroom without needing to hold on to furniture or the walls to keep herself steady. Her balance improved, and this led to her being able to walk more and become fit. She exercises almost every day — we had to arrange our meeting around her exercise schedule. She no longer has heat intolerance. “Aside from elimination of heat intolerance–from not being able to get off my bath bench after a barely lukewarm shower, I can now take HOT showers, baths, and hottubs!”

Most of the focus on neurological exams and public awareness is on the visible signs of MS. All of us with MS have a plethora of invisible symptoms. Lori described some of the major changes in her ‘invisible symptoms’ since her angioplasty:

“I also have not had one of what I called “my MS headaches” that were specifically behind my left eye–not too severe in intensity but would not fade completely for more than a day no matter how much Ibuprofen I took! I used to get these headaches a few times a month, almost weekly, but NONE since treatment 2-1/2 years ago.

“I also suffered from wildly erratic emotions–would cry at the drop-of-a-hat over nothing, and bouts of hysterical laughter–again over nothing. Any little sudden noise would startle me and I was terrified I would have a heart attack. I found this was called pseudobulbar affect (PBA) and was considered a symptom (though not-much-talked-about) relatively common in MS. It’s been fine since the treatment.

“So many other little things also improved–like not feeling sick to my stomach when turning my head–that it’s impossible to remember and list them all, but they’ve really improved my quality of life.”

You will note that she doesn’t talk about the procedure being a cure. She still has MS. But her quality of life has improved significantly.

Lori studied broadcast journalism and has a passion for getting information correct and getting information out to the public. She is frustrated with sloppy journalism and sensationalistic reporting. She had done a lot of media reports telling her story, as she is ‘walking proof’ that it worked for her. She is currently writing letters to provincial and federal health agencies to advocate for Canadian services. She is articulate and tireless. And she’s a really nice person.

What I want to know is why nobody has ordered a follow-up MRI for her. You would think there would be enough intellectual curiosity to see if her MRIs have changed since her diagnosis or subsequent follow-ups. If those neurological exams are not sensitive enough to pick up my MS after 8 years, you realize that they are very gross measures of what’s happening in the brain.

I’ll look forward to meeting up with her again.

Four days ago, I was scheduled at UBC for a full MRI of my central nervous system — the brain and spinal cord. I was there at 8:30 and left at 10:30. I brought music with me and hoped that I would be OK as this was a much longer procedure than my first two that were only about 15 minutes. I lay down on the table and the nurse put in the IV for the gadolinium, the contrast agent they would be administering to me. After sliding me into the machine, they took images of my brain without contrast, then with contrast. Halfway through, they brought me out to check on me and to give me instructions on what to do as they moved down my spinal cord. I was pretty relaxed and as we were approaching the end, I decided to open my eyes to see how small the space was. The top of the space was pretty close, perhaps 6 inches or so. I closed my eyes again for a bit but then kept them open for the last five minutes. I did fine and didn’t feel claustrophobic at all. I think being trapped in my body with all the pain has ‘cured’ my claustrophobia.

As I was out at UBC, I dropped by the MS Clinic to book a follow-up appointment with my MS neurologist. I couldn’t get one until May 9. I did put myself on the cancellation list. I also ordered the CD of the scan and the radiology report, so I should receive those in the mail sometime next week.

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Thanks to Sarah for this link to a nice webinar given by Dr. Traboulsee, “Paradigm Shift for MS Therapy” , delivered for staff of the Provincial Health Services. He reviews current medications and other treatments coming soon.