Last Saturday, we celebrated our 35th high school reunion. A couple of my friends and former classmates did a beautiful job of planning and making the event memorable. Our graduating class was only 40 students, so all of us knew each other to some degree. While it wasn’t a great school academically in the 70s, it offered good athletics and helped me form important friendships. And with all of my medical challenges in recent years, the only friends who have really stood by me are the friends I made at LFA. For me personally, being at a small school was a good thing at that time of my life.

We started off the day on a tour of the school.They did a beautiful job of incorporating parts of the old buildings with the new school, such as the stained-glass windows and the use of solid Douglas Fir beams as benches.

We were in awe of the new development and facilities. The gymnasium is top-notch and they have labs now, so the students don’t go up to Vancouver College for Physics and Chemistry anymore, like I did. Although, I admit, I enjoyed those classes as it prepared me for university, and helped me make friends with some smart boys!

I wasn’t 100% sure I would be up to it, but I was feeling pretty good last week. So, about 10 days ago, I went shopping at Value Village to find an outfit that would help me look like Sister Pat, our homeroom teacher. And I wrote a little speech and offered a toast to our ‘unique’ class. I enjoyed hearing the laughter as I gave the speech and I received some good feedback afterwards. I left shortly after dinner as I was tired. It was nice to see people again.

Our tour guide Ben Fitch uploaded photos he took of our class at the school on the LFA website.

Last night, I found a blog I had started on blogger about my facial pain/trigeminal neuralgia. It’s really interesting to read what I wrote between May 23 – June 30, 2010. I also see where I bear some responsibility for not having an MRI earlier, although I’m sure I would have if the neurologist #2 and I hadn’t had that rocky interaction on June 22.

It was good to re-read what my experience was like with neurologist #2. I had started out liking him. My first appointment with him was on June 3. But before I saw him, I had already done a lot of reading and thinking.

Saturday, May 29, 2010

I’ve been reading all afternoon about imaging techniques for peripheral nerves. If an MRI does not show the superior cerebellar artery on the nerve root of cranial nerve V, will it show other areas of nerve damage? There is still the possibility of MS or another lesion interfering with the nerve.

Thursday, June 3, 2010

Busy Day

I had an appointment with the neurologist this morning. I really like him — we’re going to work well together.

Our plan is to stay on these meds for another 2-3 weeks, then titrate down and monitor the situation. He wants my nerves to ‘settle down’ before we do that.

I also finished the crown with my dentist. We did it without pain killers or anesthetic. I have a generalized soreness now — which is to be expected. But no neurological pain, shocks or major trauma.

The thing I am enjoying the best about ‘that tooth’ that had bothered me since 2008 — it now feels just like the upper molar on the left side of my mouth that I used to compare it to. I used to say that it felt ‘alive’ and now it feels ‘dead’ just like it should after a root canal.

The neurologist said it’s not likely that there was full compression of a nerve, otherwise I would have felt numbness. However, the possibility of irritation was intriguing to him. He wants to do an MRI to assess the cause. I want him to choose to do one based on continuing symptoms. We’ll probably reach a compromise on that one. I told him I was claustrophobic, thus part of my reluctance for the MRI. He did a careful screen of the cranial nerves adjacent to the trigeminal nerve in the brainstem to rule out any possible problem there. Neurologically, I’m fine, which is reassuring.

Monday, June 14, 2010

Conversation with neurologist

I was able to have a phone conversation with my neurologist today. He questioned my allergy to Tegretol, saying that my symptoms wouldn’t be improving at these lower doses. In fact, he said if I were really allergic, I should have stopped the drugs immediately. I’m still trying to figure out who would have advised me to do that as every person I saw had a different theory about the rash and fever. And it wasn’t until I took a close look at the new book I have “Striking Back” where they describe the rash and fever as allergic reactions. Anyway, the symptoms are improving. The rash is beginning to clear up.

The neurologist said it was unlikely I’d be able to get an MRI in Richmond as he doesn’t have admitting privileges there. I told him to put me on the list anyway and I’ll learn to deal with my claustrophobia. I’ll get Daniel to build me a chamber and we’ll practice:-) Or something.

Dr Y told me there was nothing he could do to alleviate my fear of future pain that hasn’t happened. He also told me that nobody knows if the root canal on the bottom tooth will send my system into overdrive again.

Anyway, so my backup for pain once I’m done the Tegretol (tonight or tomorrow morning?) will be the Lyrica. I told him I needed a plan and that I needed somebody to be in charge of my meds. I want an expert in neurological pain.

Tuesday, June 22, 2010

. . .Then I went to see the neurologist. I had some questions for him and he got quite defensive. Then he proceeded to tell me a couple of revised statements from the previous week, denying he said what he said to me. I’m not stupid. I take notes. I blogged about it! He didn’t listen to me today — when I described to him why I went into ER last week, as soon as I described the first symptom of my arm being numb, he told me “that’s normal” as if I don’t know what’s normal for me and abnormal for me. And this was abnormal. I knew that I was on the losing end of that battle as he would always have the upper hand in the court of public opinion being an accomplished MD PhD. I am so glad I went into ER otherwise I wouldn’t have known about my distressed liver.

I asked to see my blood test from Friday. The enzymes are still high. It will take a while for my liver to get back to normal.

He told me to contact him again if any symptoms recur. Of course, if I ever need another neurologist, I can’t go back to one who lied to me. We can disagree — that’s fine. Lying to me is a completely different thing. I am really disappointed with that.

It was this interaction that set me back 2.5 years. The irony is that I would have been better off staying with him. I would have had the MRI within a few months and been diagnosed with MS earlier. A case of 20/20 hindsight, although when I read the entry I made about the trip to ER, it helps me understand why I stopped worrying about things as they explained things to me in a way that made sense to them and to me.

Tuesday, June 15, 2010

Another trip to ER

Last evening I had a couple more twinges. When Daniel got home we discussed the time to go completely off Tegretol. We decided it made sense to have a good night’s sleep and take the last one last night.

Well, at 1:40 am I woke up suddenly, lying on my left side — and my left arm was numb. It felt a bit weird, so I got up and moved around and gradually got feeling back. So I went back to bed and lay on my back and fell asleep again. Then I woke up as the numbness had come back.

I got up and called the 24 hour nurse line to discuss the issue with a registered nurse. She went through her protocol and there were enough potential warning signs that she recommended going into ER.

So, I woke Daniel up and off we went to ER. This time was very different from the last time as I was calm, cool, collected — not in a panic like last time. It helped that I wasn’t in intense neurological pain though.

Fortunately, it was a relatively slow night in ER, so I had all the docs consulting on my case and a couple came in and examined me. There was some general concern that it took me a long time to get instructed to get off the Tegretol.

Anyway, I got screened for stroke and possible heart problems. All my vitals and other neurological signs were good. The consensus seemed to be that it was a compression of a blood vessel — not a nerve but blood vessel. And the fact that I don’t turn over in my sleep as much may account for it — a side effect of the sedating effect of Tegretol, although they acknowledged that I was now on a very low dose.

They also did some blood work. The liver enzymes were high — they agreed that the processing of the Tegretol in the liver was causing this problem. I got a printout of the numbers and my GP and neurologist will have access to them. Doctor “Claire” told me she was glad that I wasn’t drinking alcohol during this time. She reassured me that the liver is good at healing itself and things will get back to normal now that I’m off the Tegretol. She said to monitor the symptoms — rash especially — as an indication of how my liver was managing.

If anyone is reading this to try to understand what went wrong, there are interesting insights in this blog . As my pain lessened and I had a chance to focus on helping my mom in her final months and to plan her funeral with her, I tried my best to move forward with life. It wouldn’t be until May the following year when I’d be attacked with unbearable pain again while eating.

I have been increasingly bothered by the change in my tongue since starting Tecfidera. I saw my GP last week but she wasn’t too worried about it. Since then, it has worsened. I contacted the Biogen nurse on Tuesday and she recommended stopping the drug for now as she will contact my neurologist to discuss how we should manage. I sent them both the photo so they could see what I’m talking about. The nurse hadn’t heard about this side effect but I told her there are a couple of people on the facebook support group who have it.

I was encouraged taking this drug as I had none of the more common side effects, such as flushing or gastrointestinal problems. What’s going on in my mouth may be manageable if we can determine that it is oral thrush or candida fungus. So, we may just be looking at a short break and then get back to it, I hope.

From Web MD :

Small amounts of the candida fungus are present in the mouth, digestive tract, and skin of most healthy people and are normally kept in check by other bacteria and microorganisms in the body. However, certain illnesses, stress, or medications can disturb the delicate balance, causing the fungus candida to grow out of control, causing thrush.

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Update: My neurologist responded to me today. He suggests that I stay off Tecfidera until all symptoms are resolved, then try again. He suspects I have an allergy to it. He says it’s rare with this drug but I seem to be sensitive to a lot of pharmaceutical drugs. We’ll explore other options if this one doesn’t work for me.

This blog is dedicated to all people suffering without answers to their questions.

This website and blog initially started as one for my professional life. When I was unable to work and struggling to get a diagnosis for my facial pain, I converted it into a place where I could tell my story. I wanted people to know that I had a good, full and rich life until I was blindsided by this unusual presentation of multiple sclerosis. You see, if you have trigeminal neuralgia as an early presenting symptom, you are generally younger. As none of my many lesions are in “eloquent” areas (a term my MS neurologist uses), I would still be able to go through a neurological exam without any visible evidence of the disease. Only the most skilled neurologists are able to detect any of the subtle changes. The reality is that I’ve had MS since at least 2005.

I consider this exercise to be a form of narrative therapy. Thanks to Chaplain Laura for the inspiration and resources she provided in her Transitions Group at G.F. Strong Rehab Centre.

I have outlined the chronology of my journey on the page facial pain/ms with links to corresponding blog posts.

UPDATE: Relapse starting in May 2016 has exacerbated some symptoms and provided me with some new ones. As it’s focused in the brain stem again, it is a serious relapse.

Last year, I spoke to my husband about his needing to find a new GP for his benefit as I would not ever contact his GP if he needed help. I would take him to a walk-in clinic or an emergency department before having any interaction with the man who laughed at me and mocked me when I was in pain. That GP continued to receive MRI reports and gastroenterology reports, although I had communicated to my neurologist and gastroenterologist that I had a new GP. He did nothing to correct these wayward reports to the doctors and felt at liberty to read them and discuss them with my husband months later. While he had been my husband’s GP for a few years, he was mine for only three months, from October 18, 2011 to January 18, 2012.

Monday, August 13, 2012

Vancouver, BC

_________ (full name used without the title “Dr.”)

My husband went to see you to on Friday to inform you that he would not be continuing with you as a patient. He let you know that your behaviour towards me on January 18, 2012 was unacceptable when you accused me of pretending to have pain in order to seek attention.

For your information, the gastroenterologist who admitted me to [hospital] in December has been instructed to revise the multitude of errors he made in my intake and other reports, including his difficulty in taking a history from me where he confused my biological family with my adoptive family as well as his made up term [diagnosis] of post-herpetic neuralgia. I have met with their VP of Medical Affairs to discuss the situation.

Your contemptuous tone of voice and your treatment of me on January 18 by telling me that I should see a psychiatrist because all of my problems were “in my head” were highly objectionable. You refused to talk about the side effects of the new medication I was on stating, incorrectly, that I had been on that medication before.

I had not planned on writing to you directly as any confrontation or challenge would be my word against yours as your derision and mocking of me was behind closed doors without witnesses. When I had a pain in my face, you put your hand on your face and said, in effect, “There you go, pretending you have pain just to get sympathy.”

Of course, the sheer irony of all of this is that I had a serious chronic sinus infection that was treated successfully by the brilliant diagnostician and surgeon, Dr. Amin Javer. And, subsequent brain MRIs have revealed possible multiple sclerosis. All in my head, indeed.

When my husband returned from his meeting with you on Friday, Aug 10, 2012, he told me that you had advice for me. It appears that not only did you read the MRI reports that had been sent to you in error; you believed you were at liberty to discuss the results with my husband. This is highly unethical and most shocking to me. Your continued description of my psychologist as my “friend” is also insulting and not becoming of a physician.

No human being should be treated by another human being in the way that you treated me, regardless of mental health. The fact that a physician did it to a vulnerable woman in pain is unpardonable. You are a disgrace to your profession.

Jennifer Sweeney, M.Sc., RSLP

Between October 4, 2005 and June 2007, I did not see a GP as I had decided to leave this GP and I was looking for a new one. I had several doctors retire and transfer my case to other physicians. I had great hope for this one. Unfortunately, the next one was just as bad . . . if not worse.

July 17, 2007

Dear Dr. ______

I wanted to write to you to explain why I have moved to another doctor. My first appointment with you was February 20, 2004 and the last one October 4, 2005. Two of my previous family doctors had closed their practices and I was committed to supporting women doctors.

In the summer of 2005 my father was very ill with esophageal cancer and died seven weeks after his diagnosis. While you were in China, my family dealt with his palliative care, his death, his funeral and his personal and professional business.

The last time we met, I was uncomfortable with our conversation. I had been called back for further testing after a mammogram. As I tried to explain the confusion with follow-up appointments to you and my dissatisfaction with the situation, I felt judged, unheard and unsupported.

I had also experienced unusual facial numbness in September which had resolved by early October. You told me that I should cancel the appointment with the neurologist so that he could see people who needed to be seen. I was scheduled to see him the next day. Your comment made me feel devalued. I decided to go anyway because I know that the onset of progressive neurological conditions can be subtle.

As I am currently entering an early menopause and inevitably getting older, I want to have a supportive partnership with my doctor. That day I realized that it wasn’t going to be you.

I do understand the stresses of running a business as well as the challenges in the health care system. These are the same reasons I left it behind. I also hope that you consider that your patients may also be under complex stressful situations and it is important to create a safe place where it’s okay to be vulnerable.

Thank you for continuing to provide quality care to members of our community. I wish you well in your practice.

Well, on Day 4 I am having what looks like thrush on my tongue — whitish and spongy with cracks near the tip. My mouth tastes even stranger than usual. Thrush is a fungal infection and common among people who are immunocompromised. There is the possibility of low lymphocytes on this drug and an inability to fight off a fungal infection.

I have an appointment with my GP on Wednesday. And I’ll continue to monitor.

I started taking Tecfidera this morning on the advice of my Case Manager from Biogen. I had one with breakfast and the next one with dinner. I had no flushing, no stomach cramps — the only thing I’ve noticed is that my mouth tastes a bit strange. But I’ve had unusual taste sensations for some time.

So far, so good. I’m on a facebook support group for people with MS who are taking Tec or considering taking it, so I’ve heard of some people with interesting side effects as well as others with none. For the majority, the side effects disappear over time.

The MS Society has published a nice summary of the drug and how it works on their website. And Wheelchair Kamikaze gives an excellent and more detailed and thorough description here .

“You look great!”, people tell me all the time, assuming that looking great means health as it usually does for ‘normal’ people, which then goes along with feeling great. I don’t feel great or normal. Some days are better than others.

When Daniel and I were in Washington, D.C. in May, we started our travel ritual of a small nightcap of duty-free single malt scotch. I also had a glass of wine with dinner. Within two days, I started having small shocks on the right side of my mouth when eating and brushing my teeth. I stopped the small bits of alcohol, and a few days later, by the time we got to New York, the shocks had stopped. Along with the shocks came the emotional tailspin of fear and fear of pain and lamenting the fact that I couldn’t get at least one year pain/symptom-free after the rhizotomy — not even 6 months!

Back at home, a month later, we celebrated our anniversary and my birthday. Two nice dinners, one small glass of wine at each . . . then nerve sensations from my upper lip to my palate while washing my face. High emotion again. It gradually lessened until three days ago when they stopped. I guess any alcohol is out for me now. I used to like wine a lot but it doesn’t taste the same. I’ve lost a lot of taste/pleasure with this MS but it’s easier to live with that than the trigeminal nerve pain.

So, in order to manage this MS and reduce the progression, I made a decision to try the new oral drug, Tecfidera. I needed to get blood work to make sure my white blood cell count was adequate, then see if my extended health plan would cover the cost, as it’s about $32,000 per year. (In the U.S., it’s $55,000!) Fortunately, Manulife approved me for 100% coverage without making me jump through hoops. It’s almost unheard-of to be approved so quickly with minimal hassle. I hooked up with the case manger for Biogen yesterday and we’re set to go. The drug should be at my pharmacy today or tomorrow.

ADDENDUM:

Tecfidera arrived this afternoon! The Biogen nurse suggested waiting until tomorrow to start . . . we’ll see how it goes. Let’s hope my side effects are minimal to none.