I received a copy of a note that the neurologist #5 wrote to some doctors about my current condition where he states that gastroparesis from MS is rare and therefore unlikely the cause of my current condition. (I gave up communicating with him on July 6 as it was leading nowhere with him offering me a referral to a gastroenterologist or a psychiatrist.) He claims to have discussed this issue with me in his report when he did not. I would have argued with him — and reminded him of the lesion in my left medulla — and no doubt would have remembered that! He did all of this without attempting to contact me which really disappoints me. He is a decent man but there were others who acted by breaching confidence and interfering with my personal decisions.

Apparently, in neurologist #5’s words, I am “not severely affected by the MS.” Well, I would gladly give up the use of my legs to NOT have the trigeminal neuralgia and and digestive problems that I do have. Who has that choice with an unpredictable neurodegenerative disease?

Rare or not, I have a lesion in the part of the brain stem where the vagus nerve arises. I’m not sure how exactly one identifies the exact location of a problem lesion in relation to its cranial nerve. They seem to be able to do it easily with lesions in the pons (trigeminal nerve) but not as easily with lesions in the medulla.

And Trigeminal Neuralgia from MS is rare too.

I haven’t had a decent bowel movement since June 28.

I self-referred to the palliative team and they have been mostly wonderful.

Not sure what the next steps are but I feel like I am running out of options. Fortunately, I am able to eat a bit more than I was able to a few weeks ago, so the weight loss has stabilized somewhat but I seem to be quite a ways from putting any of it back on.

Doctors are always told “When you hear hoofbeats, think of horses not zebras!”

Well, I’ve been a zebra ever since the start of my problems and continue to be one, even to the old neurologist who is the “expert”. Their default position is always psychiatry even though I have MRI evidence of the cause of my zebraness.

My sister Miriam was visiting this week from New York. She snapped this photo of me and Daniel yesterday. I’m 108 lbs and still suffering from the gastroparesis where food just sits in my stomach and doesn’t digest quickly.

I sleep on a wedge so I don’t breathe in or taste my stomach contents at night and I think that gravity helps with clearing my stomach overnight.

Three quarters of my face is numb, I move my bowels every 3-4 days in small amounts. I’ve lost most of the ability to taste food.

It’s difficult literally starving to death and I’m fortunate that I have a palliative care team supporting me. The worst part about this wasting away is that it’s so slow! Fortunately, I’ve been able to continue going to the bathroom on my own and walk short distances.

I guess it’s one day at a time for now.

I have been losing a lot of weight again and it looks like in many ways we’re right back to where I was in late 2011. This time we know what is causing it and I have an official MS diagnosis. When I eat, food sits in my stomach for hours (gastroparesis) and I taste it regularly. I can’t eat enough to sustain my weight and I’m getting weaker each day.

The Vagus Nerve and the Digestive System

Beginning in the brain, the vagus nerve travels down alongside the esophagus to the stomach and other gastrointestinal organs and is primarily responsible for autonomic regulation involved in heart, lung and gastrointestinal function. The vagus nerve controls much of the activity of the stomach, intestine and pancreas and plays a role in food processing, including:

– contractions of the stomach to break food into smaller particles
– release of gastric acid required for food processing
– emptying of the stomach contents into the small intestine
– secretion of digestive pancreatic enzymes that enable absorption of calories
– controlling sensations of hunger, satisfaction and fullness.

I am not interested in tube feeds this time, nor am I interested in experiencing trigeminal neuralgia on the other side of my face. I have decided to let nature take its course without life-saving medical interventions. I have chosen to engage with the local palliative care team. I am seeking comfort and pain relief, if necessary. As the oral route for pain medications is compromised, I will need some help.

Through all of this, Daniel has remained steadfast and loving. He is making me beautiful soups that should be easy to digest but they’re still a challenge for me. At least I am getting some nutrients into my body while we plan next steps.

Last week I found the most interesting and informative blog written by a local young woman with gastroparesis who is keeping herself alive with TPN. She is brave, smart, and a great writer. She expresses much of what I am feeling in some of the posts.

People have been suggesting I consider something like this to buy myself some time . . . spend some time reading it and you may understand why it’s not an option for me . And I ask myself, buy some time . . . for what? More misery? More suffering?

What is also interesting to me is that if any doctors I saw (besides my two friends — radiologist in Portland and pediatrician here in Vancouver) had actually LISTENED to me, we would have arrived at the recognition of the symptoms of gastroparesis and the possibility of MS a lot sooner than we did. This problem happened for a long time in 2011 along with facial pain. And the brain stem lesions in the MRI (two or more in the right pons, large lesion left medulla) fully explain all the symptoms.

Interesting to see that in 2006, an article in PubMed said that upper GI problems are rarely reported in MS. Well, I guess this confirms that I continue to be rare and unusual. Gee, I hope some keen neurology student can learn something from all the stuff I’ve put up here! It will probably take the profession of neurology another 20 years before they even ask questions related to GI problems. I’ve been asked about swallowing a couple of times. And I’ve been asked about constipation a total of once!

September 4, 2013

Dear Dr. X:

I was hoping to be able to find you as I wanted to update you on what has happened since we last met. When I saw that you were a neurology resident, I thought it was even more important that you know the outcome of my story.

I first saw you for my concern about gastrointestinal complaints (severe constipation, reflux) and weight loss at the (hospital A) ER department in October, 2011. Almost three months later, I saw you again after I had been admitted to (hospital B) for more of the same. In addition, you may recall that I had trigeminal neuralgia that my former neurologist called ‘idiopathic’ without having truly investigated the cause of the pain.

You wrote the discharge summary from (hospital B) and you did a good job on it with the information that was in the chart that I have reviewed. You said that I was given the assurance that there was no underlying patholog y. But I am disappointed that you didn’t chart at all about my numb feet . I clearly recall telling you about the numbness.

I had been trying for months to get help as I knew there was something seriously wrong with my body but nobody would really listen to me. Unfortunately, this happens to a lot of people, mostly women. Once the team at (hospital B) decided I was mentally ill with an eating disorder, I knew I wasn’t getting anywhere. I knew that I had not been fully assessed. I did have hope when I saw you again as that’s when my general care did improve – perhaps Dr. F didn’t like me. Although, I imagine it must be difficult for all concerned who had to ‘care’ for me when they must have thought I was just doing all of that to get attention. None of you had any idea how much I had suffered and how much more suffering I was going to have until I got a diagnosis and some help. You will probably never, ever experience that type of pain in your life, even on your deathbed.

After my discharge from (hospital B), I went to see the GP I had been seeing for only a couple of months. He laughed at me and mocked after he received the reports from (hospital B). I quickly found a new GP and things started to turn around after that.

An MRI in May 2012 revealed evidence of demyelination. I had to chase down Dr.(neurologist #3) for the recommended follow-up MRI in July, then I had to bypass him to get myself referred to the MS Clinic. Dr. (neurologist #3) saw me on October 9, 2012, and told me I couldn’t have MS if there were no changes in my muscle strength or reflexes. He was wrong.

It was at UBCH Urgent Care in November 2012 where I was finally was seen by some doctors who decided not to go the psychiatric route (as chosen by hospital B) and admitted me for pain and brought in a neurologist right away. Dr. Silke Cresswell, neurologist, advocated for me to be admitted. I was diagnosed quickly with MS and the brainstem lesions from the MRIs that (neurologist #3) ordered – but never looked at – were consistent with my major physical complaints. (left medulla, right pons)

As I tend to be very sensitive to drugs, I developed an allergy to phenytoin. I was unable to control my pain with pharmaceuticals. I then had to go to Winnipeg for a balloon compression rhizotomy that has taken me out of pain for now.

I am hoping that my case will be of benefit for medical professionals to learn more about MS and its interesting presentations. I have learned that many of us with MS are misdiagnosed with psychiatric conditions before our concerns are taken seriously.

I have outlined my case in great detail on my blog at my website, www.jennifersweeney.ca As I haven’t been able to work in my profession for a while, I converted my professional website into a personal site with my online medical record.

I invite you to look at it and perhaps to share it with some of your colleagues. I should not have been left as long as I was without a brain MRI, especially with the facial pain, as it could have had multiple etiologies, including a brain tumour.

You were nice to me and I appreciated that. I have hope that you will be part of a new generation of neurologists that combine good bedside manner with superior diagnostic skills. Please don’t hesitate to order MRIs, read the reports and insist on looking at the images yourself. It may be time consuming but you may spare somebody the suffering I have been through.

I’ve included a copy of my MRI from March 2013 for you to review. It’s amazing to me that I can have that many lesions, including old (cavitated) ones and dark holes and still be able to go through a physical exam with no observable evidence of MS. In order to get to the diagnosis, a doctor would actually have to listen to me – and look at the MRI.

Thanks,

Jennifer Sweeney, M.Sc.
Vancouver, B.C.

www.jennifersweeney.ca

Daniel came with me to my neurology appointment yesterday. My neuro talked about the challenges of relapses involving the brain stem. They are severe and last longer.

I continue to have problems eating and digesting food. We had a bit of promise earlier this week that looked like perhaps I was getting on top of  it as well as the candida.

Some of my clinical signs have improved, such as reduced nystagmus and INO. But I’ve lost strength in my left hip flexor and the most distressing part for me is the lack of digestive ability. I’ve been here before and been written off as mentally ill before being diagnosed with MS. But I know that it’s my vagus nerve.

I got a new prescription for Nystatin to try to get rid of the candida. But everything I take by mouth is a challenge and I need to find ways to hold on.

My neuro (neurologist #5) says that none of my early lesions were in ‘eloquent’ areas and that meant my presentation of MS was unusual. And it explains why so many medical people, including neurologists, missed it.

I realize it’s been almost two months since I last wrote a post. As we enter an early spring, things are getting back to normal. My energy is good, I’m back at the gym, and my social life has actually been more active. It took a while for me to move past the last trauma of the pain and the surgery. The facial numbness is profound and strange but there is no pain. For the first month or so I had a few strange nerve sensations that gave me some anxiety but they seem to have settled down.

I decided to leave the business partnership I entered into last year as I realized I just didn’t have the drive to help people in the way I used to, especially after the last surgery. I continue to volunteer for the MS Society by facilitating a monthly group on The Wahls Protocol. I am so also a volunteer for the Trigeminal Association of Canada for people in BC, as I am occasionally asked to correspond with people who have TN from MS or people who are considering going to Winnipeg and Dr. Kaufmann for help instead of waiting for 2-3 years for Dr. Honey here in BC.

I have lots of ideas about things I want to do. So, rest assured that I am still here, I’m doing well, and incredibly grateful for my good fortune with my home life and my team of support.

I was contacted this past week to participate in the volunteer patient program at VGH again. I had a session with neurology students and the instructor was the head of the MS Clinic at UBC. The next day I had a session with second year medical students taught by a wonderful neurosurgeon who really gave me the opportunity to tell my story. He was very interested in my surgery and he understood that it indicated that the TN I had was profound as it is a rare procedure.

Upcoming are my annual MRI on March 12, a speaking engagement for the meeting of the Trigeminal Association BC Chapter meeting, tentatively scheduled for April 2. And I get to see my lovely neurologist on April 14.

Just to let readers of my blog to know that I had a very good experience yesterday at the other large hospital in town. I went in under the advice and counsel of my lovely sinus surgeon, Dr. Amin Javer . I spent the day there and they analyzed the fluid from my nose — and they gave me specific instructions on how to do it, how much to gather and what to do with it. I had blood drawn. And then I had a specific CT of my head done according to the Javer protocol.

When Dr. Javer was finished his surgeries for the day, he and his resident explained their findings. No evidence of cerebrospinal fluid in my nasal dripping, no sign of problems in any of the potential leak areas in my head. And Dr. Javer explained that the cutting of the trigeminal nerve has affected my parasympathetic nervous system and is now over-reacting. He says that the alteration in my taste will likely also be lifelong. He gave me a prescription for a nasal spray that will help with the dripping.

And with a great sense of relief and gratitude, I asked him if I could give him a hug.

He is a truly great doctor and I am among the lucky people in the world to be one of his patients. Smart, clear thinking, and kind. Thank you Dr. Javer, for peace of mind. And to you Dr. Kaufmann, for eliminating my pain.

It’s a good Christmas today.

I asked Daniel to take a photo of my staples the day after surgery as I wanted a record of the healing. Each day, I had a bit more energy and felt encouraged with the recovery. I knew I was to watch for signs of infection or discharge from the wound. No issue there. And it was nice to know that once I washed my hair, my scar wasn’t visible.

And after a week, it seemed that most of the things I most feared were not happening — headache, return of pain etc. At about day 10, Thursday, December 10, I thought I was coming down with a cold as my nose started to run. After a couple of days I started to wonder why the cold didn’t evolve like a normal cold with increased congestion or a sore throat. Then I started to wonder if this was a dreaded cerebrospinal fluid leak. So, on Sunday, I wrote to Olive in Winnipeg and asked if I should be alarmed.

I received a response the next day and was advised to keep my head elevated 24 hours a day to see if the dripping would resolve on its own. In my discharge notes they had recommended I see my doctor as well. I saw him on Tuesday afternoon. He thought it was serious enough to send me to Emergency. So, I went and they admitted me for observation that resulted in an unsatisfactory experience for all involved.

It was somewhat frustrating at the hospital because I saw different people every day and each had a different opinion. I had provided them with Dr. Kaufmann’s cell phone number and email address but they did not contact him. However, on Thursday morning when they started wanting to escalate the intervention, I called Dr. Kaufmann myself to discuss. He had a different choice of management. I wanted to discuss it further with the resident who had been assigned to me that day but he was too busy to come and talk with me. The neurosurgeon whose official care I was under only saw me once during the whole hospitalization early my first morning and never came back. All communication with him took place between the residents and the nurses. Somehow, my neurosurgeon in Winnipeg and I were not part of the decision-making team.

It is very difficult to build trust when communication is poor. And I spent two full days in the hospital confused, receiving mixed messages, in less than ideal conditions.

I waited for several hours for Thursday’s resident to return to discuss and formulate a plan. He was paged and said he would be by in 30 minutes and I waited an additional two hours after that. It was approaching dinner time. I was on a ward with sick people . . . my husband had come by to pick me up, so I discharged myself “against medical advice” as the nurses had no discharge instructions from a doctor.

Upon my arrival home, I wrote to my neurologist and to Dr. Kaufmann explaining the situation to them. I am capable of doing everything that the nursing staff was doing for me at the hospital, in a much cleaner and quieter environment — monitoring my temperature, asking myself if I have any pain or headache, giving myself medications, etc. The only thing I can’t check at home is my blood pressure but it’s always 95-100/65 so it’s not really an issue as far as I can see. And we live 5 minutes away from the hospital by car or ambulance.

The irony is that last night I came down with a real cold, so that has made things a bit tricky for me. I have to stifle coughs and sneezes and make sure that I do not blow my nose. I am sitting a lot, sleeping with my head up at least 30 degrees and doing my best to eat well to maintain healing nutritional status.

My right ear is somewhat plugged so I’m taking that as a good sign, indicating that there is fluid building up there and perhaps suggesting that a leak into my ear from my skull is slowing and possibly healing.

Dr. Kaufmann has asked me to keep him informed of my status. The nasal drip has been present for 10 days and is much less than it was a week ago. If it doesn’t resolve, I may need another surgery to repair it. But we still don’t know if it’s a leak or not.

On Monday, we met with Dr. Kaufmann for a pre-surgical consult. He offered us a couple of choices, including another rhizotomy. He wanted to make sure that we considered all the risks and the understanding that the nerve cutting procedure is irreversible. If he cuts too much, I could be left with some significant deficits. He also said it would be possible to repeat the balloon compression rhizotomy and that gave the possibility of some very good long-term relief. After some tears and re-thinking about the risk to my good eye — my right eye — we opted for the rhizotomy.

At Tuesday’s surgery, all went well. Dr. Kaufmann reported to Daniel that he was able to inflate the balloon to the maximum and keep it inflated 3 minutes each at .6 .7 and .8 mL. I came out of the general anesthetic early and was up and about in a few short hours. I was out of pain. I was not as numb as I expected to be and the lack of increased numbness worried me a bit. But there was no pain, so I was encouraged. As I was doing so well and not in pain, I was able to leave the hospital the same day.

Daniel and I had just finished dinner in our hotel room. I leaned over to reach for the newspaper and had an electric shock up my forehead. Uh-oh . . . I knew from that moment that this did not bode well. I emailed Dr. Kaufmann and the nurse, Olive. We got a quick response and were encouraged to go in for another appointment the next day.

In the morning, I had another big shock as I washed my face, all around my eye and up my forehead. Ouch. We met with Dr. Kaufmann and talked about options again. He was concerned about the fact we had travel considerations and lived in Vancouver. But we asked him to think of us as living in Winnipeg and to make a plan from there. Fortunately, the whole team stepped up and reorganized surgical schedules and appointments to give me an appointment on Monday morning.

We’ll be doing the Dandy procedure. Others call it a total sensory rhizotomy . It will involve cutting into my skull behind the ear and severing two-thirds of the nerve. It will lead to total numbness, have possible complications with my eye, as well as reduced jaw opening. So, if I have to puree food, c’est la vie.

Tuesday, Wednesday and Thursday were very tough days. Lots of pain breakthroughs as bad as pre-surgery. It felt like my face was lighting up like a neon sign with the electric pain shooting through! Since yesterday morning, I’ve been doing well as the drugs seem to be holding the pain back.

In the meantime . . . it’s been an active week here in Winnipeg with the Grey Cup in town.