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.

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.

In September, I had asked my GP for a neurology referral because I knew that the onset of progressive neurological conditions was often subtle. I knew this from my work, and I was instrumental in the diagnosis of a woman with ALS early in my SLP career. I recall having a nice interaction with this neurologist. Many of my GF Strong clients had seen him, and I always like putting faces to names.

I told him that I was concerned about possible MS. I did not tell him about my father’s death as I knew how often medical problems get dismissed for women because of assumptions about our ’emotional’ reactions to grief, just like the woman with ALS whose husband had died. I had seen too much of it already in my work with brain injury cases and the medico-legal nightmares of my clients.

So, he did his full exam. This is the full report. Other than getting my profession wrong, the rest was pretty accurate. You can see he was looking for ‘stress’ in my life.

I did give him the info on Raynaud’s phenomemon. I wonder if the distinction between primary and secondary Raynaud’s was known in 2005.

I needed to find a new GP as the one who referred me to this neurologist wanted me to cancel the appointment after the numbness went away so he could see people who really needed to see him. She was also angry with me for cancelling an appointment while she was away. How was she supposed to go away if people weren’t willing to see her locums? I told her I cancelled because my dad died and we were planning his funeral. She didn’t apologize.

In hindsight, I wish I had requested a non-urgent MRI at that time. I didn’t know that I could and since I was claustrophobic, I wasn’t too keen to have one.

In 2005, my father (adoptive) was diagnosed with esophageal cancer. By that time, it had metastasized to his bones. I believe it was in July that he could not get out of bed and he never did again. He was admitted to UBC hospital and he was waiting for a bed in hospice. There was a lot to do as the family was arranging care for my dad.

On the morning of September 1, I noticed that the left side of my face was numb. Over the next couple of weeks, dad got worse — and the numbness persisted. So, I did manage to go to see my GP because I wanted a neurology referral. I was concerned about the possibility of MS because I knew that the onset could be as subtle as that facial numbness. The referral went through and the focus returned to dad. We visited and had our chance to say our final words.

At about 3:00 am on September 19 I woke up — it was unusual to wake up as I didn’t have to go the bathroom. When the phone rang at 7:00, I said to my husband that it was because my dad had died. I picked up the phone. It was UBC hospital calling to give me the news that he died at 2:55 am. I called my mom to let her know. Coincidentally, she had woken up at about 3:00 as well.

The family worked together to organize the funeral and it was held on September 23, 2005. I worked with a talented friend who made up a gorgeous funeral card for him with photos and pictures I scanned for her. At his bedside was a beautiful card my cousin Erin made for him, so we incorporated that into the design. I wrote the text in an inspired moment with fond memories of his good nature.

The day after his funeral, the numbness went away.

I reported on my Raynaud’s phenomenon while in hospital. I told them I had had it for about 10 years, but somehow it became 1 year and the 1 year error was repeated several times. Although I had been told Raynaud’s meant nothing, it surprised me to keep seeing it — why report on something that means nothing? Maybe my numb feet didn’t get reported because it didn’t have a cool sounding medical name to go with it.

My husband just called it the “white fingers of death”.

I have had Raynaud’s for at least 10 years. I had done a bit of reading about it to try to understand it. The first neurologist I saw in 2005 mentioned it in his report but he never asked me more about it.

I just found this website that describes a very important distinction between Primary and Secondary Raynaud’s Phenomenon.

Primary — no known cause

Secondary Raynaud’s – due to an underlying cause

In less than 1 in 10 cases, there is an underlying cause. This is called secondary Raynaud’s. Various conditions of blood vessels, joints, muscles, nerves or skin can cause secondary Raynaud’s. For example, scleroderma, rheumatoid arthritis, multiple sclerosis , systemic lupus erythematosus (SLE) and other ‘connective tissue’ diseases. . .

Often, the underlying condition is already present, and you may develop Raynaud’s as a complication. Sometimes the symptoms of Raynaud’s occur first, and other symptoms of the underlying condition develop weeks, months or even years later.

In secondary Raynaud’s, symptoms may first begin in just one or two fingers on one hand. This is in contrast to primary Raynaud’s when all fingers on both hands are typically affected.

On October 9, 2012, when I met with neurologist #3 to discuss my MRI — the one who told me that I didn’t have MS and that constipation had nothing to do with MS — he gave me the dismissive hand gesture when I mentioned Raynaud’s to him. How many clues do you have to give a neurologist before he will open his eyes and realize that he just could be wrong?

You probably can guess which type of Raynaud’s I had.

I was in the car this morning and heard this program about whistle blowers in health. You will pay the price if you speak out.

White Coat Black Art: Blowing the Whistle on Bad Medicine

Maybe some things could change here — Dr. Goldman is optimistic.

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.

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.

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.

On January 6, we planned a discharge meeting for 10:00 with the attending physician, Dr. M, and Resident K. My husband had a tough time parking, so he was a bit late — a bit distressing for both of us because he is NEVER late. The attending physician didn’t seem to understand why it was important to me for him to be there. I was surprised that there would be any question and I assumed they would think it was important too. So, when he arrived, the meeting commenced.

I took notes as I always do. They assured me that there was no ‘pathology’ — at least no ‘life-threatening’ pathology. We discussed a plan for me to increase my oral caloric intake to 2000 calories/day and to gain weight at about 1 lb/week. That alone was surprising to me as there was no discussion about ‘nutrition’ with a self-professed nutrition expert. It was all about calories.

I was to follow up with the out patient dietitian. I was to follow up with my family physician within the week and to see him for weekly ‘weigh-ins’. I was to continue with drugs, including pantoprazole, mirtazapine and gabapentin. Dr. M gave me a prescription for a ton of gabapentin as it is tolerable in high doses for most people. And I was to follow-up with Dr. M at her clinic within the next two weeks. Yes, that’s right — her eating disorders clinic, despite the psychiatric assessments that did not indicate an eating disorder. If your only tool is a hammer . . . I guess they couldn’t really think of another reason that I wasn’t eating and they wanted to prevent another hospital admission. I was more than happy to do that. I had tried my best to prevent this one and I NEVER wanted to go through that hell again.

The other main focus of this meeting was to tell me to stop being ‘disease focused’ as I needed to work on ‘life balance’ and get back to doing things that I liked to do. They recommended that I engage in cognitive behavioral therapy. There were no suggestions on how to do that or where to go for that. Fortunately, I had been seeing my psychologist and I would be back to see her after returning home.

Resident K wrote the discharge summary. She did a pretty good job, summarizing the information in the chart and fortunately, did not repeat the many errors in the initial GI consult report. But that didn’t mean that the GI consult was out of circulation. And at that time, I didn’t know exactly what it said but I knew the hospital admission had saved my life but left me on my own again with no real answers.

And she called me Mrs. Sweeney — I HATE that!!!! — almost as much as I hate being called a ‘lady’ in medical reports. Fortunately, in this report, she called me a 51-year-old female. My husband and I have different last names. It surprised me that a young woman would call me Mrs.

I’m not a lady and I’m not a Mrs.

On the morning of January 3, I was woken up by a familiar face. The new resident on my case, Dr. K, was the same resident I had seen about three months earlier on October 14 at VGH. I went into emergency there seeking help as I was losing weight (about 124 lbs) and I wanted to prevent a hospital admission. I went in calmly and coolly, knowing that I was on the verge of some possible serious consequences. At that time, she encouraged me to pursue any options I had. I knew there was something wrong with my body but everything was ‘normal’, so I was sent home as I wasn’t dying on the spot and wasn’t in need of emergency treatment.

So, it was a surprise to see her and perhaps it was a surprise for her to see me. The tone of my interactions with physicians and other staff improved over those last few days and she was responsive to me. I was concerned about the lack of tone in my anal sphincter. They were sending me home before I regained control of my bowels. She told me it would improve. I told her about my numb feet but that never got into the chart notes or her discharge summary.

I had some hope that she might do some additional thinking and perhaps consider what might really be happening to me. But she was under orders from the attending physician and all I was at this time was a case for residents to practice on and to discharge me as soon as possible.

My husband had organized meals and food contributions from friends, and that was really nice to have visitors with real food. I spent the last few days walking as much as I could around the ward to try to regain strength. On January 5, the feeding tube got blocked again, so they pulled it out for good.

I forgot to mention any follow-ups with the psychiatry resident. He was a nice man who came in for chats once in a while. I had one last meeting with the female psychiatry resident who first saw me with the official psychiatrist, and I was cleared to go home. Nice to know that none of the psychiatrists thought I was seriously mentally ill. The admitting gastroenterologist had told my husband that I would be in the hospital for a long time, probably because he thought I would be admitted to the psych ward.