I received a question in a comment posted today about Tecfidera and my facial pain/shocks. (There was also a nice compliment that I had to include!)

Hi! I was curious if you are still on Tecfidera and how is it working? Did it cause you to have TN shocks when first getting on it? ( like first week starting full dose?)
This blog is a great resource! Thanks for making it.

So, I realized it would be a good idea to talk about my second try with Tec. I am on a facebook group with about 1,400 people using or interested in using Tecfidera. From their experiences and their discussions with neurologists, I decided that I could increase my dose more gradually than the standard ‘one size fits all’ instructions they give. In Canada, all of our pills are 120 mg, it made it easy for me to do.

Instead of one week at 120 mg twice a day, I decided to go for two weeks. And then, instead of doubling it right away, I decided to spend another week with 120 mg in the morning, then 2 x 120 mg in the evening. This morning was the first day of taking 2 x 120 mg in the morning and the evening, i.e., full dose. So far, so good.

I have not had any major facial shocks since late June, so there has been no relation to the Tec. I have had an achy face at times, but nothing too debilitating. And since restarting my use of the Tec, I find that the ‘buzz’ I have on my lower right tooth #44 is less noticeable when I brush my teeth.

At the end of day 22, all is well. One episode of flushing, very mild nausea at times, a bit of constipation . . . and the tongue is better than it was the first time round. And today my feet felt more ‘normal’ than they have in a long time.

For the first couple of days in hospital, my attending physician was an older, experienced male. His write-ups on Rate MDs is quite good. I liked him. He had a good beside manner. He evaluated me with a group of residents or medical students in the room; however, I can’t find a chart note about the evaluation or his signature on any of the notes, although, in the discharge summary it states that I had been admitted to the Clinical Teaching Unit for investigation of my symptoms. Many the notes labelled CTU – Yellow are written by residents. I guess I was a teaching guinea pig. That doc did notice a right-sided facial droop when he examined me. I said it was probably from the botox injections I had had in November from neurologist #3. Nothing written about it in the chart notes. Of course, knowing that I have MS, it’s possible that the facial droop could have been associated with brainstem lesions. Interesting that my pediatrician friend considered possible MS with the trigeminal neuralgia plus GI problems. With all those doctors and keen medical students, you might think that the question would be asked or they might say ? MS in the note. But the fact that I was seeing the top GI doc and and a well-known neurologist seems to have frozen their brains. Or they might have believed I was too old for MS, even though you can get MS at any age.

It has been reported in the literature that people have starved to death from the pain of TN. On his website, Dr. Honey talks about Dr. Johann Bausch, a doctor who starved to death from TN . I believe he’s referring to me in this comment:

Readers will be horrified to know that one of my patients reported that she almost starved to death before the diagnosis was made and she received treatment in 2012.  History repeats!

On December 29, very early in the morning, the tube feed was blocked and they tried flushing the tube unsuccessfully at about 3:00 am. It was plugged and would need to be changed. Later that morning of December 29, before breakfast, my new attending physician came into my room and woke me up. She introduced herself and told me she was an expert in ‘nutrition’. I reached for her hand to thank her.

Little did I know that she was either on her way to a meeting or just finished with a meeting where my case was discussed. A decision had been made. My problem was ‘functional’ as per GI — all of us in health care know that is a code word that means ‘in your head’, and they were going to at least treat my pain. They would be sending me home asap and I would follow up with her in her office because she is an eating disorders specialist. The assessment had been made and no further investigations would be made. No neurology, no swallowing assessment. But it’s interesting to note that the psychiatrist said I didn’t have an eating disorder. I guess they didn’t listen to her either.

None of this was communicated to me at this time and I was still holding out for some hope. I thought I might be able to engage in discussion with some of the doctors but I was excluded from discussion. So much for patient-centred care. Once you’re ‘crazy’, you are not part of your own team. Nothing I said about other symptoms (e.g., numb feet) ever made it in the notes.

At least they had expertise on the complexities of ‘refeeding’ that is referred to in the note. This is moving from a starvation state to feeding again and they did extensive blood work to monitor me everyday until my discharge. I was grateful for that expertise. The additional complication is that starvation can cause GI problems, so the picture was muddy.

I should never have reached the point of being hospitalized. Where did the system fail me? What did I do wrong?

On December 27, after being seen by the admitting doctor and then the nurse, I was in my room with my husband when a psychiatrist came in for an interview, along with a resident. The great irony of all of this is that her report was the most accurate of all the reports that I’ve reviewed. It appears that she interviewed me without bias — perhaps she hadn’t had time to read the gastroenterologist’s admission report. Or perhaps, as a psychiatrist, she might have been annoyed that he seemed to think he was a psychiatrist as well as a gastroenterologist! I love this line “just wants digestive system to work again” — she got it!!! She had a couple of small errors, like attributing a phrase my husband used to me, and the number of years we’ve been married, but other than that she seemed to ‘get it’ that I wasn’t crazy and that I didn’t have an eating disorder.

– Don’t think an eating disorder present. Hungry, wants to eat, good insight into medical consequences of weight loss, no body image distortion.
– ↓ mood; depression likely. Reluctant to engage with psych meds at this time. May benefit from antidepressant such as nortriptyline or duloxetine to treat chronic pain. Will leave choice up to treating team or neurologist.
– Please re-consult if any new concerns.

So, she listened, believed I had pain, didn’t see any need for continuing psych involvement. Many of us with MS see psychiatrists because psychiatric problems are common secondary diagnoses. But my problem wasn’t a primary psychiatric problem and I knew it.

However, it seems that the team decided I needed a psychiatrist, and another one came in to see me after right after I got back from my tube-feed placement.

And I held out some hope of seeing another neurologist as I was already so unhappy and disillusioned with mine — the chance to see one without having to wait for a year was encouraging and I remember feeling quite hopeful after this interview.

Nursing – History and Physical Examination

The nursing intake assessment was thorough although she took notes from the admitting doctor, so she perpetuated some of his errors , including the family history that connected my biological father with my adoptive mother. In the notes on medical history, it read: 1. Trigeminal neuralgia ?post nerve root canal ? post herpetic (∅ rash) dx 18 months ago on Rt. Side.

The rest was pretty good except a few errors and simplifications: 3. Constipation = since summer, she’s having 1BM/wk [varied much more significantly and none on my own for almost a month], 4. Raynaud’s = x 1 year [10 years], 8. Anxiety – [to be honest, if you had pain every time you put something in your mouth, you’d be anxious too!!], and unfortunately, they put in a request for the reports from neurologist #3, with the diagnosis of ‘idiopathic trigeminal neuralgia’ and his error-filled history and subsequent neglect. They assumed I was in good care. And, again, I showed no obvious neurological deficit in the exam. The major question seemed to be a query of an eating disorder. Psychiatry had been made aware of my arrival.

The likelihood that errors will live on in medical records is well described in a great article my radiologist friend Marc sent me about ‘curiosity’. He shares it with all of his the medical students he trains. (I would love to see him give this lecture!)  Here’s a humourous excerpt:

One senior resident once presented a patient in morning report and, as part of the physical examination, mentioned a scar in the patient’s groin. When I asked how the scar had been acquired, she said, “He told me he was bitten by a snake there.”

“How did that happen?” I asked.

“I don’t know,” she said.

How could that be? How could one not ask? The imagination runs riot with the possibilities of how this man got bitten by a snake in the groin. But the resident was too busy (or not curious enough) to ask!

The admitting gastroenterologist wasn’t curious enough to wonder how I didn’t know that my mother was dead! Boggles the mind, doesn’t it?

The article “Curiosity” can be downloaded here.

After being admitted, I was moved up to a room that had been a lounge. The hospital was very crowded and I knew I was fortunate. Being ambulatory was a good thing as I had to walk down the hallway to use the bathroom. I got hooked up to an IV right away and they started to replenish my body fluids as I was dehydrated.

The next day I went down to a surgical unit to get prepped for the placement of a feeding tube. I had some questions prepared for the doctor — and yes, it was the same doctor who admitted me.  He stated in his report that I was very focused on my GI tract. What’s interesting with this report is he did a pretty good job of listening to me and writing down what I said and asked him. Yet, I have to remember at this point, he had already written me off as ‘crazy’. I was trying to make sense of things by focusing on the only thing that I knew for certain and had evidence for that was ‘wrong’ with me, the hiatal hernia. (If you hear hoofbeats, think horses, not zebras.) Yet, if you think of the complexity of the whole GI tract and the neurology of it, I think what he saw makes a lot of sense, in the context of my yet-to-be diagnosed MS and the unknown lesion in the left medulla (tenth cranial nerve or vagus nerve).

He incorporated some of my questions into the history. I had wanted to speak with an ‘expert’ and I did respect his training, even if he was not my choice of doctors.

“She has gone on to the point where she has now developed significant obstipation . . .” I really don’t know what he was suggesting there. It almost sounds like I willed myself to be constipated. You can’t force your neurological system to work better or worse by willing it to do so. I kept records of my bowel movements daily from the time I was in France because I knew it was a big problem.

Before hospitalization, the last BM I had on my own that I would consider to be anywhere near normal was November 23. And before that, October 19, November 3, and November 11. When do those things become urgent? I tried to get help, I faxed the GI specialist I was seeing seven times asking for guidance. With the help of a colonic hydrotherapist, I removed a huge fecal obstruction on November 30. I wouldn’t have been able to excrete it without the assistance of the hour-long colonic. With nobody there to witness it, it got reported on December 8 as ‘reasonable’ by my GI doctor in his report to my GP. (If you’re still reading this, the big take-away is to ALWAYS get copies of specialist reports because I’ve noticed that they seem to reinterpret what you say. As embarrassing as it was for me to talk about these things to a young man, I was so disappointed when I read how he minimized what I told him.) This GI doc I had initially seen privately in October and he surmised that my problems were connected to ‘visceral hypersensitivity’. When I asked him about MS on December 8, he shook his head; however, at that time, he did order a CT scan and a colonoscopy looking for cancer.

The swallowing problems I had — regurgitation of food, pills stuck in the esophagus, tasting dinner again at night — are similar to the lack of movement of stool in my colon. Movement of food in the esophagus is peristalsis, and is mediated by the vagus nerve, just like movement of stool in the colon. I had complained of stool not being ‘on deck’ and he has visual evidence of it in this colonscopy he did. I came out of sedation while he was doing this unexpected colonoscopy and remember being in pain and saying ‘ow’. I did sign the consent form but I don’t remember having a discussion about it.

Perhaps asking himself why there was ‘excessive’ stool at the beginning of the colon that was not moving across to the left might have given him some insight. (Note that I never complained of heartburn yet it miraculously appears in my chart notes later. I think the internal medicine team was struggling to find a diagnosis that would combine the psychological/psychiatric problems with my ‘complaints’ so they could put a label on it. They came up with ‘functional dyspepsia’. More on that later.)

It irritated me when I read what he said about my request to insert the tube in my left naris. I told him I had a deviated septum and he wouldn’t be able to pass on the right. I knew this as I had been unable to scope myself through the right when I was learning to use an nasopharyngeal scope in my clinical training in Wisconsin. The way he chose to describe it made me sound childish and sort of stupid. Who would want a feeding tube through the nostril that is easier to breathe through?

He ended his report with a series of impressions. He had an afterthought about his conversation with my husband that I have edited out, as though he had spoken to him again. Since they only spoke once, it was extraneous information and not really relevant.

I appreciate the fact that he believed he had done his job by ruling out organic GI problems. At least he suggested that I be seen by Neurology as well as Psychiatry. I saw two psychiatrists but no neurologist. I think they all believed I was in good hands with neurologist #3, the one who did little for me.

What didn’t get considered was the neurological component. And, perhaps if a neurologist had been contacted, some questions might have been raised.

Fortunately for me, this tube got kinked. It was a large gauge and very uncomfortable. I had a new one that was much more comfortable put in two days later by a resident. Funny that impressions and drugs and dosages used and all sorts of extra comments like “she does require a lot of sedation” got dictated into these reports but the size of the tubes are not reported. I wondered if he had given me the big one at first to get back at me for not being nice. I really did wonder that.

I had one last face-to-face encounter with that doc. He had arrived for a team meeting on January 2 and stopped by my room to see me. I was eating breakfast and he was holding a large disposable coffee cup. I said that I was looking forward to the day that I could drink coffee again. His note from that encounter,  “Much more alert today – actually cheerful! Tube feeds planned this week. Likely short admission for volume?/nutrition – hopefully to break cycle.”

This post has taken me a while to get to, mainly because the whole ordeal was so traumatic, and it’s a long story. It gives me new insight and empathy for people who are mentally ill and who have health problems, especially if they’re subtle or invisible, like mine were. As the local neurosurgeon stated in his report, I’m a meticulous historian. I keep notes in my appointment books and I have for many years. And I keep them. I worked with enough people with brain injuries who had medico-legal cases, and I understand the importance of accurate records. I knew how problematic inaccurate records could be, and I knew that errors are more common than most people appreciate.

Before going to emergency, I had a terrible time trying to find help . In hindsight, I really needed to find a GP to help me. I had been trying in the summer as I was already unhappy with GP #2. She was less than helpful as I got worse, and it’s even harder to find a new doctor when you’re in distress. If my pediatrician friend had been my GP, I would have been helped at least the month before this hospitalization, and probably years earlier. He listened to me thoroughly and gave my situation a lot of thought. He suggested MS as a possibility or least as something that should be ruled out.

I had lost the ability to move my bowels on my own. I was hypersensitive to anything in my mouth. I slept sitting up. I ate very little. On Christmas Eve, I asked my husband to take me to the ER of the hospital where my gastroenterologist had admitting privileges, as I wanted to have his support. I was offered a meeting with a psychiatrist. I knew I wasn’t out of my mind (yet), so I walked away. We went home. Christmas Day was miserable. The next day we went back to the same hospital and refused to leave until I was admitted. We waited a long time. I asked a nurse to give me a lethal injection to put me out of my misery. They sent us home with a promise that we would be seen the next day by gastroenterology. So, on December 27, we went back and I was admitted. In the admitting ward off of the ER, the on-call gastroenterologist walked in, brusquely ordered my husband to wait outside with a word and a hand gesture, then he interviewed me.

“What are you doing here?,” he barked at me, as he stood at the foot of my bed. Wow, I thought to myself, this guy has a great bedside manner. Let’s say I was rubbed the wrong way and in my condition, I had no ability to rise above it. I have met plenty of arrogant and rude people in different situations but it was rare to encounter that attitude in a health facility. I responded, matching his attitude, “I have atypical GERD and idiopathic or atypical trigeminal neuralgia, and being a middle-aged woman, I guess that makes me ‘crazy’.” He proceeded to ask me several questions and I stuck to the facts, as well as my experiences, to the best of my ability. When he asked about my family history, I told him about my genetic family history as he was a medical doctor and that’s usually what they’re looking for. I didn’t like him at all. I figured that once I got through this and admitted that perhaps I wouldn’t see him again and then the great docs in this hospital could help me figure out what was wrong with me.

I have a copy of the notes he jotted down while speaking with me. He put some of the things I said in quotation marks. He put his own words like ‘counselor’ when I told him about my psychologist. (I would never call a psychologist a counsellor as they are two different things. A psychologist may use counselling techniques but they are so much more than ‘counsellors’.) I gave him the analogy of my mouth feeling like a pH monitor with my hypersensitivity to acidity, although by this time, I was having pain with everything I ate.

I would say these notes accurately reflected the conversation we had along with his observations, except for the emotional tone of our interaction as I didn’t like him and he was obviously annoyed by me. You can see in these notes that he initially got the information about my family correct. My mother (biological) alive at 86, my father dead of lymphoma. After he met with me, he met with my husband. Apparently, he didn’t ask my husband about my physical health or my family. All he asked my husband was, “Have there been any emotional upsets in her life recently?” and my husband told him that my mother had died the year before. That was my adoptive mother. My husband is not really familiar with how medical people work or think — that was my domain. Not once did this gastroenterologist ask for clarification from either one of us. Not a single person on the health care team ever asked about it. It would have been very easy to explain. As my psychologist put it months later, “He intercepted the football and ran all the way on his own for the touchdown.”

The unfortunate thing about these dictated electronic records is that they are available to any doctor who is treating you. So, if I get referred to another doctor, they have these at their fingertips.

[I was treated abusively by my GP on January 18 after discharge from the hospital. And on February 14, neurologist #3 asked me why they thought I had post-herpetic neuralgia. It’s a good thing he asked about it as that prompted me to request my records. The incorrect term came from this one specialist who went way beyond his area of specialty and jumped to several conclusions. His three reports were the only ones in my medical records that used the term post-herpetic neuralgia. When I saw my attending physician in March (as an outpatient) about the use of the term — before receiving the copies of my records — she said that it must have been a resident.]

This is how the consultation report looked when it got dictated after the gastroenterologist had a chance to digest and speculate. I received these reports on Friday, April  13, 2012, four days before my sinus surgery. I was stunned. And then everything made sense.

I’ve pulled out the sections that caused me concern:

He mixed up my parents. My biological father died of lymphoma. My biological mother was alive. My adoptive father died of esophageal cancer, and my adoptive mother of lung cancer. Both my adoptive parents had metastatic cancers.

Later in his report he says this:

Obviously, I was delusional and my husband was the sane one. I didn’t know my mother was dead! At least he documented the fact that he spoke to both of us separately. Sort of a power interrogation technique, it seems.

His were the only reports that used the term post-herpetic neuralgia (nerve pain after shingles) but in this report and the two subsequent ones he did, he made reference to the fact that I had never had a rash on my face. This isn’t surprising as I have never had shingles. And he made note of it in his original handwritten note above in the upper right corner ‘never had shingles’.

As you read those descriptions, you start to realize he is expressing some doubts about the pain I was experiencing. I tried to describe how scary it was to be eating but not having bowel movements. This had been going on since mid-September. And I used an analogy to describe the sensitivity to acidity in my mouth, that he chose to rephrase in a way that made me sound really ‘crazy':

To cap it all off, he insulted my psychologist by referring to her as a ‘counsellor’ and somehow it was surprising that I’m not keen on being diagnosed by a gastroenterologist as having a conversion disorder. That was probably when I turned my back to him.

My husband joined me after his ‘interview’. I told him how unpleasant mine had been. He encouraged me to be nice as that gastroenterologist had the power to admit me or to turn us away. So, when the GI doc came back some time later, I smiled. He told us that I would be admitted. In his note he said that I was starving and would probably be back again if they didn’t admit me. We thanked him.

This is a letter I wrote to Dr. Kaufmann, 10 December, 2012, after being denied surgery at VGH and sent home on Dilantin. When I started to have a reaction to the Dilantin, my GP was unable to get any response from Dr. Honey’s office. Neurologist #5 learned that he was out of town. So, I asked my GP to make referral for me to Winnipeg, as I knew of Dr. Kaufmann’s reputation. He also did a procedure that would be better for me and my ‘good’ eye because of the involvement of the upper branch of my trigeminal nerve.

10 December 2012

Dear Dr. Kaufmann,

I have had two very nice conversations with [nurse]. I have had a long and tortuous journey to a diagnosis of multiple sclerosis, made by neurolgist #5 on November 15, 2012.

I have placed a lot of information on my personal website and blog if that will help you understand my situation. I have summarized the history on the page “Facial Pain”. The blog includes some youtube videos, including recent ones of me talking and eating with a straw. It can be found at www.jennifersweeney.ca

I have had recent severe exacerbation of my pain and we are coming to the end of drug management. I have liver toxicity with Tegretol and Dilantin (recent blood work attached) and I am currently on Lyrica, 150 mg bid, with insufficient pain relief.

I am unable to eat except with a straw and have started to lose weight again. One year ago (December 27, 2011) I was hospitalized for the same problems yet was treated as a psychiatric case. Unfortunately, the GI doc who admitted me decided I was a psychiatric case and wrote that I had post-herpetic neuralgia. Never having had shingles, it was a mystery to me. I believe it had something to do with his confirmation bias as he proceeded to make me sound infantile and delusional. Anyway, it’s been a long, difficult year. Finally having the MS diagnosis makes everything make sense.

Also unfortunately, the psychiatrist’s assessment I had while in hospital was the best assessment/summary of my situation up to that date, yet it did not hold much influence in the care I received. I’ve enclosed it here. I did not see a neurologist while there. And the neurologist I was seeing for my facial pain did not believe I had MS, even when I last saw him on October 9, 2012. He hadn’t bothered to look at the MRI from July.

I saw Dr. Honey during my recent hospitalization for pain, yet he saw me when I was out of pain after IV Dilantin. I had been referred to him for a rhizotomy by neurologist #5. I understand that it is important to rule out all drug management before considering a rhizotomy. Less than a week later, I was unable to function or think and then developed a rash. At this point, I believe the rhizotomy is my last hope for any degree of a normal life.

I have pain and or triggers on all 3 branches of my trigeminal nerve. Up until recently, the majority of the pain was in V2, up my face, and around my nose and upper lip. My recent hospitalization was from pain continuing up to V1, all the way up to the top of my head. The pain in V3 is minimal, mostly along the gumline with a major trigger at tooth #44 that has a big impact on my eating. Right now, I have allodynia again in my mouth. It has come and gone over the past 2.5 years. And every time it went away I prayed it wouldn’t come back. Now that I know I have MS, the situation is different.

I have also provided you with a copy of the MRI that was recommended by radiology to assess MS. As I told [nurse], I am willing to go to False Creek Health Care to have another one done privately and quickly if you need to have a better one.

Many thanks,

I was fortunate that they recognized my cry for help and were able to get me in for surgery within a few weeks.

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.

Last year, on Friday, August 10, at 11:36 am, I received the written MRI report via e-mail from neurologist #3’s assistant. When I read the report, it was 100% confirmed for me that I had MS. Although they had used the term ‘demyelination’ in the previous MRI, I still knew what that meant. But there is something about seeing the words ‘multiple sclerosis’ in the radiology report that makes you realize that denial is no longer an option. While it described the lesion in the left medulla that would be connected with my GI issues (affecting the vagus nerve), it did not describe a lesion in my right pons. I had hoped for that so that there would be concrete evidence for the source of my facial pain. The radiologists did their job as it was a routine bran scan — they alerted the neurologist #3 to what they were seeing and it was his responsibility to look at it more closely. (I needed to wait until November to have my MS neurologist look at this very scan closely to identify the lesion in the pons. I still can’t identify it on this scan on my home computer but I did find the lesion on the MRI I had earlier this year.)

At this same time, Daniel was over at the office of the GP who had laughed at me to inform him that he would no longer be seeing him. (I had insisted on this because I did not want my husband to be ‘cared for’ by a doctor who could treat anybody the way he treated me.) So, when he came home, I had something to discuss with him. But to my surprise, the GP #3 told Daniel at that meeting that I should stay in touch with my ‘psychologist friend’ as it looked like I had MS. (Even though I had communicated my GP #4 change in January, this previous GP #3 continued getting reports and he felt at liberty to talk to my husband about it — astonishingly unprofessional! Graduate of UBC Medical School, 1985)

I contacted GP #4 right away and made an appointment to get a referral to the MS Clinic. I had already given up on neurologist #3 as he had done nothing to help me figure things out, but I still knew it was his responsibility to review the MRI with me since he had ordered it. And since it indicated MS, I believed that I would be able to get an appointment within a couple of weeks. But I requested an appointment on Monday the 13th, and was given an appointment for two months later, on October 9.

I moved into action. I reviewed the neurologists at the MS Clinic and chose one to be referred to and prepared the referral information for my GP so that it would be an easy referral for her to make. That was completed by August 14. I looked for information on MS support groups and joined one that meets weekly at Kitsilano Community Centre on August 24. I took advantage of the workshops offered by the MS Society. I met and talked with friends of friends who had MS to gather information.

The MS Clinic appointment was originally scheduled for December 13, 2012. I stayed at home and waited, armed with drugs for facial pain. Then I did what I could with dentists and oral medicine specialists over the next couple of months to rule out other problems with my dental pain, until we reached the conclusion in October that the pain was most likely from the MS. I still wanted the concrete evidence.

On Friday, November 16 2013, when neurologist #5 came into my room at UBC hospital as I lay there in constant pain/misery, to let me know that he had identified a lesion in the right pons. I got up, walked over to the door, shook his hand to thank him, then crawled back to bed.

I had the answer I had been looking for.

I finished working on a letter to send to the neurologist who failed me. It was a difficult one to write as I wanted to say things like:

I received excellent clinical training in speech-language pathology at Purdue University with an internship at a large VA hospital in Indianapolis, in addition to training in the department of Neurology during my clinical fellowship at Marshfield Clinic. I trained students as well as a member of Clinical Faculty at UBC. There were so many errors and omissions in your reports that I would have failed you if you had been one of my students.

I had to try to let go of my anger and manage my own ego a bit. As much as I wanted to put that paragraph in the letter. I had to re-focus on the purpose of the letter.

So I wrote a better letter and I finished it off by saying:

My hope is that you will order quick MRIs for all your future facial pain patients and to look at them, review them and discuss them with your colleagues and associates to help prevent the degree of pain, suffering, neglect and abuse that I experienced.

And I dropped it off in person at his office at VGH two days ago.

The main reason I want to do this is to help prevent this from happening again to somebody else. Although I may be 1 in a million, if he had done his job, I would have at least been diagnosed earlier. There will be no apology (although one is certainly warranted) but I hope that all future patients of his — and the residents/interns he trains — will benefit from my suffering.

In hindsight, maybe I should have said ‘no’ when he handed me over to the resident to assess . Maybe he would have had a better sense of the history because the assessment report was abysmal. And I naively thought I’d get the time to help correct it but it never got any better.

And the resident will never get the chance to learn that he assessed somebody with MS and missed it too. I wonder if the information about my right upper lip numbness might have provided a clue to the neurologist as it didn’t make it into the report, although it states there was no evidence of trigeminal sensory loss. I guess the kleenex on the face is supposed to be more reliable than my subjective self-report.