These are the brain images of the last MRI on March 4, 2013. I chose images similar in orientation to the ones from July that I wrote about here and that show the lesions well.

In this image, it’s the white spots that are the lesions. There are a lot of them. This satisfies the ‘dissemination in space’ criterion for a diagnosis of MS. As there were no recently active lesions, the ‘dissemination in time’ criterion could not be met with this MRI alone, although it is highly unlikely that all of these lesions occurred at the same time. The neurologist then relies on your history and description of symptoms. In addition, an experienced neurologist can tell if some lesions are ‘old’ lesions. Neurologist #5 pointed out an old lesion to me on November 15.

This view of my cerebellum is very similar to the one from July. As there are only a few lesions here, I believe that’s why my balance and coordination have been relatively spared.

This view is similar to the one from July except that the lesions are easier to see. It was taken after the enhancing agent was administered to me. If I had any lesions that were active, they would be even brighter.

I studied all the images and each slice through the brainstem. This small white spot to the left (right side of my head) that I circled in blue is my best guess for the lesion in my pons that has caused me all of this hellish pain. Bear in mind, I could be wrong as I’m not a neurologist, radiologist or neurosurgeon.

I’m praying for two things. The first is that this lesion doesn’t get active again. The second is for the lesion to heal. Maybe it’s three things. Let’s add ‘no more lesions’ to the list.

I met with a doctor at my GP’s office yesterday as my regular doctor was away. He read the reports to me and asked me how I was feeling. I asked him if he meant physically, emotionally, or psychologically. He opted for the safe path and asked about ‘physically’. I told him that the numbness was persisting in my hands and feet. I have new pain on the top of my left toe. It’s not too bad — nothing like the pain I had in my face — but it has to be neurological.

I got copies of the reports so I could process them. The first one is MRI of the head.

A moderate burden of supra and infratentorial disease is demonstrated with classic juxtacortical, periventricular, and callosal lesions demonstrated. Many lesions demonstrate a classic perivenular morphology as well as black hole type morphology. No definite new lesion is identified.

Have you ever dictated reports? I did when I worked in the U.S. You fall into patterns and tend to repeat particular words and phrases. I’ll do my best to put into everyday language.

There are several lesions (not just a few but not a whole lot) in the upper part of the brain and the lower part of the brain. They are in the typical places found in MS, right next to the cortex (grey matter), around the ventricles and in the corpus callosum. Many of the lesions are typical shapes of MS lesions, around the veins as well as black holes. Black holes indicate dead nerve cells/severe tissue destruction. No new lesion is identified.

They say that the volume of my brain is within normal limits for a person my age. Brain atrophy is common with advanced/severe MS, so that’s encouraging. They talk about one lesion at the top of my spinal cord next to my brainstem that was not in the field of view in the earlier MRI. They call it the cervicomedullary junction/C1. There is no mention about the size of it or whether it’s more on the left or the right. I will want my neurologist to review the images with me when I see him next.

The report on my spinal cord says that the only demyelinating lesion is at the top (C1) at the junction with my brainstem. They focus more on degenerative disc disease in two other places down my spine.

Generally, the results are positive and the disease seems to be relatively slow in progression. If I can just stay out of pain, I’ll be OK.

Tomorrow I will be going into my GP’s office to get the results of my recent full MRI. They received it before I did. I’m not sure if they get the images or just the radiology report. It does assure me that my copy will be in the mail shortly.

I spent some time reviewing my MRI images from July. These are the images that the ordering neurologist (neurologist #3) didn’t bother to look at. Having studied the brain and worked with people who have had strokes and brain injuries, I was able to identify some of the classic lesions seen in MS easily.

Lesions in the corpus callosum are one of the classic signs of MS. The corpus callosum is a very thick band of myelinated nerve fibers that connects both hemispheres of the brain. You can see the slice through the corpus callosum above the black arc (lateral ventricle)  in the middle of my head. The imaging technique used for this view shows lesions as dark spots.

This picture is an axial view, meaning that it’s a slice of my brain from front to back, with the nose on top and back of my head at the bottom. Lesions in the cerebellum are also classic in MS. The cerebellum is the lower part of the brain behind the brainstem and is responsible for coordination of movement. The imaging technique used for this image shows the lesions as white spots.

This image is the same orientation as the one before but higher up in my brain. Again, the lesions are white. Lesions around the ventricles (large black curved spaces) are classic in MS. The ventricles are connected holes in the brain that contain cerebrospinal fluid.

I don’t know if you can imagine how hard it was for me to sit in neurologist #3’s office on October 9, 2012, as he told me that I didn’t have MS and that constipation has nothing to do with MS. I had looked at the images and he hadn’t. It is the height of arrogance to assume that the radiologists he works with don’t know what they’re talking about and not bother to look himself. Interesting to note how he can say one thing to my face “you don’t have MS”  and then write a report that states he has actually considered what the radiology report says.

“Her MR brain scan completed in July 2012 was reported to be consistent with a diagnosis of multiple sclerosis. . . The findings from the scan are surprising. She has never had any neurological deficit on examination and her presentation is most unusual.”

I guess if you only have deficits that are sensory (numbness/pain) or invisible (gastrointestinal), you need to have a neurologist who listens and believes you. I can only assume that he did not believe a word I said, probably even more likely after the reports from the hospital stay in December 2011/January 2012 came out with the gastroenterologist who made all the errors in my intake and said I had post-herpetic neuralgia (nerve pain after a case of shingles when I have never had shingles) and a conversion disorder.

As the graffiti in the Granville Skytrain station stated:

I haven’t written about the hospital stay in detail yet. I guess I need to.

Four days ago, I was scheduled at UBC for a full MRI of my central nervous system — the brain and spinal cord. I was there at 8:30 and left at 10:30. I brought music with me and hoped that I would be OK as this was a much longer procedure than my first two that were only about 15 minutes. I lay down on the table and the nurse put in the IV for the gadolinium, the contrast agent they would be administering to me. After sliding me into the machine, they took images of my brain without contrast, then with contrast. Halfway through, they brought me out to check on me and to give me instructions on what to do as they moved down my spinal cord. I was pretty relaxed and as we were approaching the end, I decided to open my eyes to see how small the space was. The top of the space was pretty close, perhaps 6 inches or so. I closed my eyes again for a bit but then kept them open for the last five minutes. I did fine and didn’t feel claustrophobic at all. I think being trapped in my body with all the pain has ‘cured’ my claustrophobia.

As I was out at UBC, I dropped by the MS Clinic to book a follow-up appointment with my MS neurologist. I couldn’t get one until May 9. I did put myself on the cancellation list. I also ordered the CD of the scan and the radiology report, so I should receive those in the mail sometime next week.

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Thanks to Sarah for this link to a nice webinar given by Dr. Traboulsee, “Paradigm Shift for MS Therapy” , delivered for staff of the Provincial Health Services. He reviews current medications and other treatments coming soon.

Last Wednesday, I was calling to cancel appointments as I managed to move up my MS Clinic appointment that was initially scheduled for December 13. I was having a lot of trouble talking, so my psychologist called me and told me I should get some help as she believed it was inhumane to leave me alone at home in so much pain. She contacted my doctor and then called me back and told me to get to her office. I called a cab and went. As I was there, I had several agonizing pain attacks and was on my knees sobbing in her office. I asked to be taken to UBC hospital so I would be in the same building as the MS Clinic and wouldn’t have to organize a trip from another hospital to UBC.

I didn’t know it, but UBC had been downgraded from an emergency department to urgent care, meaning that they don’t ordinarily admit there any more. Fortunately, one of the doctors at UBC is very interested in pain and they had a bed available, so I was admitted there.

We managed to get my pain under control with IV Dilantin (phenytoin) under the suggestion of the neurolgist I saw at the MS Clinic. It wasn’t difficult for him to make the diagnosis based on my history and the MRI I brought with me. What made it tricky was the fact that I have no motor deficits that you would ordinarily see, but the number of lesions in my brain and the different ages of them made it easy for the neurologist. I knew already that I had MS but it helped to hear it. I had held onto the hope that the facial pain was unrelated. But he came to see me the next day in my room to tell me a couple of things. The first was that he pulled my MRI scans out of the archives (as they had never been viewed) and looked closely at them with the radiologist. They could see a lesion on my right pons (a part of the brainstem) that made all of my symptoms consistent. And he also arranged to have me transferred over to VGH for surgery, a rhizotomy.

I had hoped to be able to finish this but my brain is in a fog from the Dilantin pills. I am not in good shape. The neurologist called on Friday. He had been away up north for an MS clinic and wasn’t able to advocate for me and surgery as he had hoped. He was afraid if the neurosurgeon saw me out of pain he wouldn’t operate. That’s what happened.

I am out of facial pain now but I am miserable. I feel sick to my stomach. My mouth tastes awful. I can’t do anything useful or productive. My husband is miserable. I am afraid for both of us. This is such suffering. It breaks my heart to see him like this but I am not myself now.

On May 30, 2011, I was preparing to go see a client downtown. I was eating lentil soup for lunch, when I had a huge neurological pain break through my face. I called to cancel.

A couple of days later, we headed off on a road trip to Calgary for our goddaughter’s graduation. While on the road, I started having nerve sensations around my temple in the shower. I knew that was the first branch of the trigeminal nerve. That meant I had pain on all three branches. I was freaking out as this one was new.

I had renewed problems on my lip and roof of my mouth. I didn’t have another full breakthrough until June 9. After that, I started to have them every day, either brushing my teeth or eating. The pain would throb through my face for 15 to 30 minutes at a time. I went to see my GP on June 13 for a new neurology referral. It was easy to get in to see her that day because the rest of the city was watching the Canucks in the playoffs.

She told me that it would be difficult to get in to see the neurologist I had requested as he had a year long waiting list. I wanted somebody who was an ‘expert’ in trigeminal neuralgia and he had been highly recommended to me. My GP told me to ask to be on the cancellation list if I could let them know that I could be there on short notice.

I waited. I had trouble eating and sleeping. I kept on working the best I could. I developed a stiff neck and a fever in mid-July. By the time the Folk Festival came around, I was out of pain but had numbness on my upper lip. By July 25, I was enjoying food again. And then I received a phone call asking if I could attend an appointment with the neurologist on July 28, as there had been a cancellation. I was doing well but was pleased that I would get a chance to have an expert opinion and perhaps some attempt at a differential diagnosis.

I arrived at his office early and waited. Then I heard somebody call “Jessica?” and again, “Jessica?” Damn, I thought, he doesn’t even have my name right. A minute later I heard, “Jennifer?” and went to meet him. I shook his hand and then he introduced me to a resident. “Dr ___ is here to learn about headaches.” I replied, “I don’t have headaches. I have trigeminal neuralgia.” At this point I was wondering what I had done asking for this neurologist. I told myself to be patient. It is a teaching hospital. I used to train students too. Eventually, this doctor will get the information he needs. I had come prepared with a written history to assist as well as the report written by the oral medicine specialist I had seen in May, 2010.

I spent 1.5 hours with the resident as he examined me and took my history. The neurologist joined us for the final 30 minutes of my two hour appointment. The resident provided a summary of my history. I had to interrupt several times to correct some details.

The neurologist told me that he would put in a request for an MRI on a non-urgent basis as I was managing and my symptoms did not strike him as typical trigeminal neuralgia and he doubted if the MRI would show anything. He did assure me that he could move the exam forward if necessary. And he also said that if surgery was indicated, he could make that happen quickly too. We booked a follow-up appointment for three months later.

The system here in BC seems to be that your GP gets the specialist reports and you don’t get them unless you request them. After the trauma of our interrupted trip to France, the struggle to get help with my GI problems and finding a new GP, I showed up for my appointment on October 26. While I was in the waiting room, I asked his office assistant if I could get a copy of the consult from July. I was sorely disappointed.

There were several parts of the history missing, including the introduction of the upper branch of the trigeminal nerve. There was no mention of the long bouts of pain in May and June. All that he seemed to use for his history was the report written by the oral medicine specialist who saw me once. Was I offended? Yes — it was obvious that the time I took to prepare a history was a complete waste of my time. There was no mention of the resident who examined me. So, if you read the report, you would have no idea that the neurologist didn’t examine me himself.

When I went into his office, I attempted to help him make corrections to the report. He listened a bit and made some changes but not a lot. When I read the note from the October meeting, he said “she presented me with a number of corrections to my March 2011 consultation report.” Funny, I hadn’t even been referred to him in March.

Now, I know we’re all human and we make mistakes. But these are medical records and they are supposed to be accurate. I laboured so hard to ensure the accuracy of my reports when I worked in healthcare and they carry no weight at all as I was just a “speech therapist.” Regardless, it was my professional responsibility to do my best. I would never have neglected to report on the fact that a student/intern/resident did the evaluation. It’s unethical. And as he sees so many patients, I am sure he by now doesn’t even remember that he didn’t do the evaluation. But I remember.

So, again, I was vulnerable. I needed to stay on good terms with this neurologist if I needed help. It’s a small city and a small medical community. He did give me some botox in my face the next month that helped a fair bit and I was grateful for that. I was losing weight as I was having so much pain and trouble eating as well as having gastrointestinal problems. He did make a couple of comments about the fact that I would benefit from taking the Lyrica pills as they would put a few pounds on me. He made lots of off-the-cuff comments like that and I found them so offensive.

Right now, knowing that I likely have MS, I can’t believe he didn’t start to look at things more seriously. He said he’d call my GP and my GI doc but I don’t think he ever did. Once I was out of his office, I was out of mind. My friend who is a pediatrician thought it could be MS. I assumed that a neurologist would at least consider it. I had spoken with the oral medicine doctor (now retired) about MS too in May 2010. He assured me that I would be in excellent hands at VGH. I’m still puzzled.

Last week I hunted down a report from a neurologist I saw in 2005 for facial numbness. I had forgotten about it until recently when I came across a letter I wrote to my GP at that time who told me not to see the neurologist after the numbness went away, so that people who really needed to see a neurologist could have his valuable time. “I decided to go anyway because I know that the onset of progressive neurological conditions can be subtle,” I wrote to her. The numbness lasted three weeks and was on the left side of my face. It got me wondering . . .

The neurology report said that the objective neurologic exam was normal. “I doubt very much that this is related to demyelinating disease. At this point in time I reassured her with regards to the above.”

I told the doctors in the hospital in January that my feet were numb. I’ve had some numbness in my hands and feet for quite a while. I figured that it could have been from malnutrition. Or from the heavy duty medications I had been on for pain.

I received the CD of my MRI two days ago and the radiology report today.

There is no real change from the previous one and the images continue to suggest multiple sclerosis. There are a few more steps to take before a definitive diagnosis can be made.

There is one positive and that is that MS isn’t as much of an ‘orphan’ disorder as trigeminal neuralgia is and the support groups will be a bit more active.

A potential negative — among the many others — is more nerve pain or neuralgia.

The most striking difference in these two images is how my septum is no longer deviated. Dr. Javer did nice work.

I had the MRI on May 19. The technicians told me that the results would be available to my neurologist right away as he is at Vancouver General and on their network. I received the radiology report from my neurologist’s assistant on Friday, June 1.

The radiology report gives good news. There is “no evidence of displacement of deviation of the cisternal segments of the trigeminal nerves bilaterally. No significant abnormality is demonstrated within the cerbellopontine angles.”

There is the possibility of some bad news. “The distribution and appearance of T2/FLAIR hyperintense lesions within the supratentorial and infratentorial brain are consistent with demyelination. Further characterization with a complete MRI brain study, including sagittal FLAIR imaging, is recommended.”

They also mentioned that “mild mucosal thickening of the maxillary sinuses is demonstrated bilaterally.” I had no idea they would report on the sinuses in an MRI. Imagine if my neurologist had decided to put a bit of a rush on the MRI instead of just ignoring me — we would have seen the infection in the right sinus and perhaps I could have been spared several months of pain.

My working theory on the observed demyelination is that the infection in the sinuses spread to my brain, resulting in some areas of demyelination. Last year, on July 10, I woke up with a stiff neck and a fever. I monitored the temperature, on the alert for meningitis. It returned to normal on July 13, so I didn’t think much about it. I will monitor symptoms over the next while and assume that my neurons will regrow myelin.

I’ve been waiting for my neurologist to contact me to review and to schedule the recommended follow-up MRI. I’m wondering how long it will take. At this point, he has no idea I had sinus surgery or that I am doing relatively well. I wonder if his caseload is so large that he has difficulty managing it or if he just doesn’t care.

My neurologist ordered an MRI for me last July on a non-urgent basis as my trigeminal pain was not typical and he didn’t think it would show anything. It had originally been scheduled for July 13 — yes, a wait of one year — but they called me on Monday to reschedule. They happened to have a spot for this morning at 8:15, so I took it. Now, I’m claustrophobic, so they suggested I take some drugs to relieve my anxiety. As I had little time to book an appointment with my GP, I thought about it and realized that I had my own resources that I could tap into. Living with the pain I’ve dealt with has been like being trapped in my body and I survived. I spent some time ‘centering’ and was relaxed when they called me in. Once I lay down on the table and put the earplugs in, I closed my eyes and ‘visited’ two of the most beautiful places in BC that I’ve been to: Cape Scott on the north end of Vancouver Island, and Cortes Island . I had just started swimming in the phosphorescent water at night on Cortes when the technician told me I was done. We were back home by 9:00.