I had the great pleasure of meeting Dr. Wahls at a conference held here last month, sponsored by the Canadian Neurovascular Health Society .

As soon as I heard she was speaking, I signed up. According to the conference organizer, I was the very first person to register. (For a nice summary of the conference, Joan Beal wrote up a post about it. Of course, that was another thrill for me — the chance to meet her! She is a true champion and very smart woman and I was really glad she attended.)

The day before she spoke, I found myself face to face with Dr. Wahls. I desperately wanted to know how to get across to people with MS that it’s worth trying her diet. She told me that I just need to accept the fact that some people are so attached to their foods and habits that they will resist. The best I can do is to encourage and set an example. But it continues to be very difficult for me to watch others in the MS community in decline while I continue to improve. No fatigue, able to work out, able to see clients again . . . I want this for everybody.

It was wonderful for her to have the chance to continue spreading the word about her own amazing story and others’ successes by following The Wahls Protocol.

After the talk, Dr. Wahls had a book of The Wahls Protocol signing in the hallway. I had mentioned to the audience that we have a Wahls Protocol Support group in Vancouver, and I encouraged people to talk with me if they wanted more information. When I went out to the book signing, there was still a long lineup. I waited until the end so that I could talk with Dr. Wahls.

Dr. Wahls was so generous with her time. She answered everybody’s questions thoroughly. I first mentioned to her that I had been in Marshfield, Wisconsin at the same time that she was there. She was a physician at Marshfield Clinic and I was doing my clinical fellowship.

I talked to her about the drug I have been taking for two years. The natural way to promote the antioxidant NRF2 pathways is through diet, exercise and stress reduction — all parts of The Wahls Protocol. I considered the side effects — which for me, were minimal — the recent cases of PML, and the recent discovery of the lymphatic system existing within the brain. After discussing a bit more with my husband, I decided to discontinue Tecfidera.

I bought another copy of her book and had it autographed. I’ll use this as a fundraiser or a gift for members of our local support group. I was really pleased to see how many of our group who attended the conference.

I left the conference early as there was election work to be done . . .

I was contacted by a reporter to discuss International Trigeminal Neuralgia Awareness Day, October 7, and the article was posted online. (I corrected the minor errors in the article in the reprinted version below.)

By Yuliya Talmazan

Today marks the second annual international Trigeminal Neuralgia awareness day, but few people in British Columbia know about the debilitating condition.

Vancouver’s 55-year-old Jennifer Sweeney had her first onset of Trigeminal Neuralgia in 2010.

The triggers for the condition were in Sweeney’s mouth, so she would be in terrible pain every time she ate.

“It would feel like being cut or stabbed,” says Sweeney. “Sometimes, it would be burning and there would be times when the pain would escalate into another phase, where it would feel like I had a poker going right through my head.”

The Trigeminal Neuralgia Association of Canada says Trigeminal Neuralgia, also called Tic Douloureux, is thought to be one of the most painful conditions known to medicine.

It is characterized by sudden and severe stabbing, bursts of shock-like or electrical pain usually on one side of the face.

The pain can be triggered by simple activities like brushing teeth, eating and drinking or talking.

Treatment options include anti-seizure medication and surgery.

Sweeney says drugs are usually tried first, but can have serious side effects.

“[The drugs] sedate you and everything slows down,” she says. “Your ability to think and function is really affected by these drugs. Sometimes you have to be on quite a high dose.”

Sweeney was allergic to drugs and had to have a surgery in Winnipeg because she could not get help in Vancouver.

Sweeney says she was laughed at by a doctor when she tried to seek help and was told to go see a psychiatrist.

“I spent almost a full year, where all I wanted to do was die until I finally got diagnosed and got some help,” she says. “I never imagined that there was a possibility of this kind of pain.”

A surgeon in Winnipeg told Sweeney some of his clients told him their pain was worse than having their arm ripped off in a car crash or having a Cesarean section without anesthetic.

About five out of every 100,000 people, or 1,500 people, are diagnosed with Trigeminal Neuralgia each year in Canada.

To help others with the condition, Sweeney writes a blog, where she talks about her experience with Trigeminal Neuralgia.

She says it has been rewarding and has given her a sense of purpose.

“I just wanted to record the fact that I was here. I was not sure what the outcome was going to be and I wanted to make sure that my story was out there. I think what I can also show is that there is some hope and I can go and do things that I used to be able to do.”

Sweeney also relies on her support group on Facebook, where people with Trigeminal Neuralgia share information, resources and ideas.

“We get to find out that we are not alone,” she says.

Ultimately, Sweeney says there is a long way to go as far as awareness about Trigeminal Neuralgia in British Columbia.

She wants to see more research being done in B.C. and a support network for people who suffer in silence.

“I would love to find a cure and a way to prevent it,” she adds.

This year’s awareness campaign is centered around children and teens with Trigeminal Neuralgia and facial pain disorders.

To commemorate the international awareness day, the Vancouver Convention Centre, Olympic Cauldron, Science World and Canada Place will all be lit up in teal tonight.

The second annual Lantern Walk of Awareness was held this weekend.

To find more about the condition and support groups available, go here.

I was asked to write an article about my experience with The Wahls Protocol™ for a newsletter for people with MS called “Shared Voices.”. I was happy to share my experience and I hope it inspires some to try it.

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 have been invited to share my story with second-year medical students at Oregon Health Science University. It inspired me to make a video of my exercise class that I participate in twice a week. I have really gained in strength, balance, and coordination since I started the program last October, after my second rhizotomy.

I have been given a full hour to talk to the students. I hope there is a good turnout! I’ll be speaking right after a very entertaining radiologist, who also happens to be an old friend, so chances are he’ll encourage the audience to stay for my presentation.

My talk is in three parts: the first about the nightmare of getting diagnosed and the multiple medical errors made. The second part is on the treatment approaches via conventional medicine plus alternative medicine, including the ‘controversial’ areas of CCSVI/Dysautonomia and diet/lifetstyle. And I end the presentation with the picture of my life today.

I’ve been sending out the youtube link of my talk to several people as I want people to know my story and also to see how well I’m doing. I am hoping that I will be able to speak to other health professionals about my experiences. At my exercise class this morning, a nurse suggested that I approach nursing schools as they train nurses to be advocates for patients. Having worked in the system myself, it takes a fair bit of guts to challenge the power hierarchy and doctors are not always willing to listen. But I do think it could be a place to start.

I sent the link to the team in Winnipeg at the Centre for Cranial Nerve Disorders. This afternoon I received this very special e-mail with the subject “Well done”

Hi Jennifer;
I enjoyed your MS Society presentation. It was excellent, highlighting the suffering and obstacles associated with TN (and MS) while providing inspiration and hope.
Thank you for sharing!

Anthony M. Kaufmann, MD, MSc, BSc (Med) FRCSC
Associate Professor, University of Manitoba (Neurosurgery)
Director, Centre for Cranial Nerve Disorders
Co-Director, Centre for Cerebrovascular Disease
Co-Director, Winnipeg Centre for Gamma Knife Surgery

This is a high compliment from a man who is in huge demand from so many people around the world desperate for help. I wrote back and said, “not only did you save my life, you made my day!”

So, I decided to open up the comments section on the video and I posted his comment there.

Other nice comments I’ve received include:

You’re a great speaker. And you look fantastic!

you are inspiring and speak so eloquently about your experience…thank-you for sharing.

Wow! Thanks for sharing. I understand more now about what you’ve experienced.

Thanks for sending this video – you look and sound strong and fit.
Your story will encourage hope to all who hear it.

It was excellent! Your story makes me want to scream. You need to write a book! I’m proud of all that you are doing to bring awareness to others about MS and TN.

That was a very nice, quite personal talk And…You’re looking strong!

I just finished watching your talk on youtube. You present very well. You do give people hope about MS.

Good to see you’re advocating for this, it seems to me this is what you are good at.

Comments from facebook friends:

Bravo Jennifer! Well done!

You shine!

How interesting. Very well done. Congrats.

Wow Jennifer….what an excellent presentation. You certainly sound like an expert to me. You give such an encouraging message….

Just listened to your talk Jennifer. What an amazing testimony of survival! It’s humbling to know that there are some things worse than death, and that you were required to face that. I especially appreciated the “reasons to hope” that you shared! May you continue to improve and boldly encourage and lead others to better health! You inspire!

well done the reasons for hope will inspire many with MS and i bet there will be a run on lavender bikes. you have amazed me since the BC Aphasia centre days and you still amaze and encourage me Jen. so proud to be your friend.

Great job my fellow MSkuteer you rocked that!!!!

Thank you, again, for mentioning CCSVI! I think they’re seeing the light a bit more!

Always enlightening to hear and rehear your story!

Yes Jennifer, you are a “gifted” presenter and an important voice out there! Everything you do is with excellence!

You are an excellent speaker, and you look mighty fine in those high heels, too! You did a great job describing your journey in only 11 minutes. I agree with Dr. Kaufmann’s comments. Well done!

And from one of my professional speaking friends, a comment that made me laugh:

Love your outfit! You’re looking great! Oh, yeah, content…it was good to see and listen. You’ve still got it! (more exclamation marks than I’ve used in a year!!)

So, keep in mind that these people are friends and acquaintances — nothing purely objective. But one of my friends sent it to another friend of hers with MS, who was OK with me getting her feedback:

I thought the video was great. I can totally relate to the isolation she must have felt . . . Thanks again for sending it to me. I found it very moving.

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.

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?

In today’s Vancouver Courier (pA19), there is an article that tells about the MS Public Education Forum held last month in Surrey. I was pleased to see that they were able to get some media in Vancouver as there are so many competing interests. I was also pleased to see the mention of ‘nerve pain’ in the description of symptoms of multiple sclerosis because most people don’t know about or think about it. It wasn’t too long ago that people with MS were told that pain was not part of the disease, yet it is for about 50% of us. While only about 4% of us get trigeminal neuralgia from MS, it is the most horrific of all the nerve pains.

One line that was used in this article and the promotional material talked about it being “an exciting time to be living with MS.”  It may be a time where we have more hope for effective treatments and perhaps one day a known cause and a cure. But it’s never an exciting time to be living with this type of disease.

Exciting?? Not really . . . hopeful? Perhaps.

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.