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.

He told me he hadn’t been able to view my MRIs as they had been archived. (This is what happens when the ordering neurologist doesn’t look at the images.) He had put in a request to get them but he wouldn’t be able to see them until the next day. I had my CD copy of the MRIs with me and we loaded them onto a computer. He was able to identify old lesions that indicated I have had MS for some time. With relief, I said, “So, the diagnosis is official?” and he said yes.

It took over a year from when I told every doctor I saw that there was something wrong with my body to get an official diagnosis.

Dr. Cresswell, on November 18, 2012, four days after assessing me

One year ago today, I was cancelling an appointment with Myrna, my psychologist. I had managed to move my December appointment at the MS Clinic to a day that week. I left her a message and she called me back because she could hear I was in a lot of pain. She told me it was inhumane to leave me at home alone in pain. She suggested I get some help but I had no idea about where I could get help because I had been so unsuccessful with neurologist #3 and I had been into ER on the weekend and they just gave me drugs. I told her that it would be just better to put me down because we put animals down when they’re in that much pain. She asked me for my GP’s number and called her. Then she called me back and told me to get into a cab and go to my GP’s office because they were going to admit me because of a risk of suicide. To be honest, I wasn’t quite suicidal yet but I couldn’t see how I could get out of pain. I was trapped in my body and had nowhere to go.

At my GP’s office, I had several bouts of electric shock pains up to the top of my head. I fell to my knees sobbing and screaming. My GP asked me which hospital I wanted to go to. I thought about VGH first but then realized I had an appointment at the MS Clinic at UBC the next day and it would be easier to just go to UBCH. That’s what I did. I got in a cab and went all the way out to UBCH and hoped that somebody there would be able to help me.

I was afraid that nobody would believe me but I couldn’t function and I was in so much pain. At this point I was not too keen on hospitals or doctors considering I had been laughed at, dismissed as a psychiatric case, treated as though I had an eating disorder, and even told by neurologist #3 five weeks beforehand that I did not have MS.

It was at UBCH that things finally turned around for me. I had the great fortune of meeting Dr. Perry who was interested in pain. And he had the good sense to call a neurologist to assess me, instead of a psychiatrist. Dr. Silke Cresswell made a persuasive case to admit me there at UBCH and fortunately, Dr. Perry had a bed available on his ward. He graciously gives Dr. Cresswell all the credit as my ‘ray of hope’ for her thorough and professional assessment.

Their support made a huge difference and they were our first rays of hope in our traumatic struggle to get answers. Not all neurologists are created equal.

Thank you Dr. Cresswell. And thank you for calling me a “pleasant patient” in your report.

Once in a while I hear from people who used to be in my life. They ask me how I am, usually by e-mail. Or the odd time I see somebody who knows I have MS and they wonder why they can’t see it. A couple of months ago, I dropped by an old friend’s workplace and she wondered where my cane was.

For people who don’t know I have MS, many say that I look great. In fact, I think I do look better than I looked 5 years ago. I am at a good weight, I eat very well when I’m not in pain. Of course, I never dreamt that eating could be painful.

I continue to take Tecfidera. The most encouraging thing with it is that brushing my teeth feels almost normal. Ever since the rhizotomy Dec 27, 2012, I’ve had a buzz at my lower right teeth when brushing — that used to be a trigger point for the pain, or what the oral specialist called ‘atypical odontalgia’.

I have eliminated dairy, wheat, refined sugar and alcohol from my diet. I minimize salt. I eat as much organic food as possible. I take supplements, including alpha lipoic acid.

I used to spend a lot of time pursuing pleasure in my life, through food, conversation and social activity. Now I am focused on avoiding pain. I will do anything I can to avoid the pain I experienced.

So, how am I? I’m a different person now. Thanks for asking.

I recently asked an experienced neuroradiologist to review my MRI from 19 May 2012 as I wanted to know if my brainstem lesions were visible on that MRI. I wasn’t sure if I would even get a response. I am so amazed and impressed. I have encountered the extremes in our healthcare system but once in a while the response is more than you could hope for. He was generous and very kind in his willingness to help me out.

In the letter I had written to him:

I am requesting a favour from you . . . I would like to know two things.

• was the lesion in the pons visible on the first MRI?
• was the lesion in the medulla visible?

As these lesions would explain my facial pain and my GI problems, I wanted to fully understand the negligence of neurologist #3.

On Thursday, October 18, I received a response. He reviewed all three of my scans:

In answer to your question, both the lesion(s) on the right side of the pons (there is probably more than one) and the lesion in the medulla were visible on the first MRI, although not as clearly shown as on the MRI at UBC which was performed with a dedicated MRI protocol and somewhat thinner slices.

Your case is unusual although certainly not unheard of, in that you have quite a number of lesions on your brain MRI (many of which appear old) with little in the way of “classical” symptoms and signs.

That tells me a lot. Yes, my MS is old. And yes, my presentation is unusual. Neurologist #3 had everything he needed after that first MRI to diagnose my MS and my pain. Perhaps neuroradiologists should be given the authority to diagnose MS and remove it from the hands of neurologists? I am sure that we would get earlier diagnoses that way. In my case, it would have saved the system a lot of money.

And at least two lesions on the right side of the pons — yikes. No wonder I had so much pain.

Link between venoplasty, MS needs more study
JENNIFER SWEENEY Jennifer Sweeney is a retired speech- language pathologist and consultant who worked with preschool children, young adults and seniors in the health care system and in private practice.
The Vancouver Sun
Oct 11 2013

In 2005, I had three weeks of leftsided facial numbness. In 2009, I started having some strange sensations on the right side of my face that my dentist thought could be from the onset of trigeminal neuralgia ( TN). I asked my GP for a referral to a…read more…

Well, that was cool. I am trying e-paper for the Vancouver Sun and it gives you the options of sharing stories on your blog. It looks sharp! I’ll scan the hard copy as I don’t know it this link will be there forever. It’s a nice feature. If you click on the picture, you get a view of the article as it was in print. And if you click on the ‘read more’ link you get a different display with no pictures.

I’ve had a few interesting calls from people who read the story and an e-mail this morning. I’m easy to find on a Google search and I appreciate the some people have taken the time to look me up.

My cousin wrote:

Jennifer, thank you for writing that article. I am sure it was difficult but it is very enlightening and could help others who are misdiagnosed, as well as encourage more research . . . it is often on the backs of those who are courageous that these battles are won

I wrote back to him and joked that there is a fine line between courageous and stupid.

And a dear friend wrote to me and said I was very brave. That meant a lot to me.

After meeting Lori Batchelor last month and thinking about the logic of having good blood flow for a healthy brain, I decided to go to AIM Medical Imaging to see whether or not I had narrowed veins. I had heard that Dr. Raj Attariwala was the best diagnostician in Canada, so I booked an appointment for September 30.

The McMaster Study showed only one person with MS who had CCSVI out of a hundred. I was eager to challenge that finding as I suspect that many people who do not have MS also have CCSVI. And if it’s only 1/100 for people with MS, then chances were slim that I would have it. It was interesting to note that they were looking specifically for vein blockages, not reduced flow or backwards flow/reflux.

Immediately after the scan, I had a consultation with the radiologist, Dr. Attariwala. I had given him copies of my previous MRIs to look at. Fortunately, there were no new lesions or active lesions. He was able to identify the lesion in my pons from the very first MRI in May of 2012. (I wish I had paid for this MRI two years ago as it would have helped guide me better than all the specialists I saw and tests I had. It would have been faster and cheaper and I probably would not have ended up hospitalized twice.)

Within a couple of hours, I had images and results. My right jugular vein flows significantly less than my left. This is the opposite of the findings at McMaster where everybody had greater flow in the right than the left. He says that this is a finding that has been “known for years.”  (from extended interview with Dr. Rodger)

The central vein is called the ‘azygos’ — it was described to me as ‘awful’.

So, it appears to me that I do have CCSVI or chronic cerebrovascular insufficiency according to these images and flow measurements. However, I am not knowledgeable enough to know or assess if I meet the full criteria for CCSVI. This is how it was described in the report:

INDICATION: History MS, query jugular venous narrowing.

TECHNICAL Conventional study: axial flair, T2, 3-D space flair, post gad T1sagittal T1 , PD, axial T2 C-spine.

Research: SWI, Venc, azygous, with subtracted multi-sequential venogram through the neck and lower head,

FINDINGS: The patient recognizes that jugular MRI venogram as well as iron deposition sequences remain in the realm of research . . . Known MS demyelination, without MRI evidence of active lesions. To be determined by ongoing research; there is associated substantia nigra iron deposition which is of uncertain significance. The jugular veins demonstrate asymmetry of flow, with the right being diminutive, with transient halting of flow, without reversal. These findings plus the controversial nature of the research component of the study was discussed with the patient.

In the images, I received a graphic representation of the flow measurements taken.

The red line represents flow in the right, the green line in the left. If the red line were to go above the horizontal line at 0, it would indicate backflow or reflux. So, the next step is to investigate further.

There are so many unanswered questions about the procedure and I’m not convinced that some of the research currently being conducted is going to lead to good answers. Most of the research has been looking for gross measures of correlation between blood flow and ways to measure it and assess it, then make pronouncements about the lack of connection with MS, end of story!! For people with MS who have benefited and thrived after the procedure, it has clouded the debate. So many people are looking for a way to end this area of research, calling it a social media phenomenon of unsubstantiated anecdotes. But they are choosing to ignore evidence right in front of them.

I think we need to ask better questions. What’s happening when people get good results from venoplasty? Why aren’t we studying them? Why is there no single-case research being done on an amazing case like Lori Batchelor? Her neurologist is on camera saying that there is improvement when she was diagnosed with secondary progressive MS. How does that happen?

Daniel and I got back three days ago from a week-long trip to visit his family in Québec. This photo is a character named Monsieur Rigolo that his dad made from wood scraps who greets visitors at their place on the banks of the Chaudière river.

It was important for me to go because it may be my last trip to see them. The last time I was there in July 2010, I was in so much pain that I couldn’t eat. I was eating a bowl of soup with a bit curry in it when I had 3 consecutive very strong and painful shocks in my mouth. From then on, brushing my teeth or eating anything mildly spicy or acidic caused me pain.

[I called my dentist when that happened and she told me not to see any other dentist until I got home as she was afraid I'd get unnecessary work done. I remember telling her that I would be OK if somebody could put a cap on the tooth #14 in my upper right. I then referred to that tooth as 'curry tooth'. When I got home, my dentist observed that the tooth was loose and she replaced the amalgam filling with a composite. She adjusted my bite as the previous dentist had messed up a crown. Things were pretty good after that until we discovered some gum disease in the lower right.]

I blended most of my meals after that and drank with a straw. I am the only person who has spent time with the family and gone home weighing less than on arrival. My mother in law is a great cook.

It was important for Daniel that I be there as there were two family events. His older brother celebrated his twenty-fifth wedding anniversary. And his father’s side of the family held a large reunion at Île d’Orléans, a picturesque island southeast of Québec City. The next day we explored the island with my brother-in-law and sister-in-law.

A couple of days later, we also spent an afternoon in Quebec City, then had dinner with old university friends of Daniel’s at beautiful Lac-Beauport.

I seemed to be in the midst of a mild relapse while there. I was a bit slow on my feet and my hands were very numb at night. I was also constipated.

I’m doing better this morning. I’ve continued with the Tecfidera and I’m tolerating it quite well. I understand that it takes 3-6 months for the full effects to be realized.

Travelling is hard now and I used to really love it. Now, I have to watch what I eat, I can’t drink wine, so there is much less pleasure. I have a lot less energy.

this is not my former GP #3 and UBC grad 1985

This post has been one that I’ve wanted to do for a long time but I needed to write all the background information before it made sense to do so. I wrote out the whole situation immediately upon my return home after this visit as I knew it was a serious violation of the code of ethics for physicians. I had considered filing a complaint with the BC College of Physicians and Surgeons but I knew that it would be his word against mine as it all took place behind closed doors with no witnesses. He could simply deny everything. Since I had seen so many psychiatrists in the hospital, I’m sure nothing would have come of it, as it would be very easy to write me off as ‘crazy’. I was extremely vulnerable.

But I will never forget this day.

In preparation for the appointment, I made a list of things that I wanted to discuss.

• weight
• swollen ankles
• dry skin
• cold feet that feel strange/numb
• medications
• reflux

I arrived early for my appointment as his office was a 5 minute walk from my house. I was escorted into the examination room by one of his staff members. I stood on the scale and recorded my weight 55.2 kg.  A few minutes later, he walked in, threw my file on the top of the desk and spat out with the most derisive tone I have ever heard directed at me, “You really need to see a psychiatrist.” I assumed he had received the hospital records. What did they say about me to warrant such a change in one week?

“Fine,” I said, “go ahead and refer me to one.” I had seen so many in the hospital already and if he insisted that I see one, I would do it. I needed a GP, and even though he had been less than helpful once he decided I was making up my symptoms, I still needed help.

Then he proceeded to tell me that he didn’t have one to refer me to . “Maybe your psychologist friend knows of one.” Hmmm. I wondered how a GP in practice for 25 years in Vancouver and a clinical instructor for the medical school at UBC didn’t have a single connection with a psychiatrist. That was astonishing to me. It was also incredibly insulting for him to call my psychologist my friend. She has clearer ethics and boundaries than most of the health professionals I had seen in recent months.

I tried to move on. I started to show him my swollen ankles from the gabapentin. “You’ve been on that drug before,” he said as he waved his hand. (Where do they learn that dismissive wave? It was the same one neurologists #2 and #3 used with me.) I didn’t argue with him. I had been on a drug called Lyrica or pregabalin before but I had never been on gabapentin. I wasn’t getting anywhere. I weighed the pros and cons of trying to correct him. I decided that it wasn’t worth it and I could discuss with the neurologist the next time I saw him.

He told me that he didn’t need to see me for weekly ‘weigh-ins’. I suppose it was because that recommendation was not in the discharge summary that Resident K wrote, although they told me to do it. At this point I didn’t care because I was not ever going to see this doctor again.

I took a deep breath. Then I had a short and relatively small electric pain breakthrough on my face, so I put my hand up reflexively.

location of nerve pain

Then his tone changed completely to a mocking tone, sort of like baby-talk with a healthy dose of contempt in it. “Oooh, feeling a little pain are you? There you go, pretending you have pain just to get a little sympathy.” You don’t know how much I wanted to punch him in the face or to give him just one hour in my body to experience the pain I had experienced. I had no power. Anything I did would be used against me. I’d probably be locked up on the psych ward if I did anything that I felt like doing. I still needed to find somebody who believed me and who would help me.

I got up and walked out without saying another word.

What did I learn from this? I learned how cruel health professionals could be. I wonder if all people with mental illnesses experience this type of abuse regularly. It was truly appalling.

this is a picture of our house, built 1911

I continued sleeping sitting up on the sofa in the den when I got back from the hospital. It took a long time for me to digest food and I would taste my dinner at night. I started to question my self-description of reflux but I had no other way to describe what was happening. It didn’t feel like ‘heartburn’ although there were some nights when I had pain around my heart. When I coughed at night, I felt pain in my face. It was really hard to sleep.

During the day I tried my best to eat. I ate several small meals a day. I used a product called Osmolite as the base for smoothies. There was no pleasure in food and there hadn’t been for months.

I was using a product called Lax-A-Day to keep my bowels moving. My pediatrician friend dropped by after work to give me advice on getting control of my bowels again.

As directed, I went to see GP #3 to check in and have a ‘weigh-in’ on January 11. It wasn’t a warm and fuzzy appointment as I had stopped going to see him in the fall when he told me I was difficult and closed-minded because I didn’t want to take the drugs he wanted to prescribe for me.

[I was looking for a diagnosis before popping pills and I still didn't have one. He had a student observe my second appointment with him and told the student in front of me that I was depressed and losing weight because of my mother's death. I told him that wasn't true. He did some blood work, looking for scleroderma, even though I hadn't had any skin thickening. I did have Raynaud's phenomenon and it got really severe as I lost weight. The irony here is that he had started looking for something autoimmune. It was only as I tried explaining my swallowing problems that he changed his mind and told me that what I was feeling wasn't happening. It was during that conversation in November that he told me that he would leave me under the care of the gastroenterologist I was seeing. I knew that was the end of any possible positive working relationship. I did say to him that I understood that swallowing was a complex process coordinated by nerves and muscles. I was getting angry and desperate for help but hit so many dead ends.]

My GP looked a bit puzzled as I tried to explain the hospitalization to him. I think there is a negative reflection on GPs when their patients go through ER to get help instead of through them but he had done nothing for me. He hadn’t received the discharge summary from the hospital yet. At this point I needed to be very careful because I might still be dependent on the medical system if I failed to gain weight. I was 55.3 kg or almost 122 lbs, up from 109 lbs at my hospital admission. I booked a follow-up appointment for a week later.

Later that week, on January 15, I moved my bowels completely on my own for the first time since November 22. That was encouraging.

I also observed that I had really swollen ankles and learned that it was a side effect of gabapentin. The information on-line said to ‘talk to your doctor’ if that happens. I had received no information about gabapentin while at the hospital.

Over that week, I re-engaged with all of my supports – acupuncture, psychologist, visceral manipulation, chiropractic, naturopath. I had lost my ability to feel hunger or satiation. And I started recording things again in my daytimer. So what if it was ‘disease-focused’ — I was determined to find out what was wrong with me as I was getting no help from the medical system. It made me wonder how many other people were out there suffering because of questionable diagnostics.