Just a quick update for those people who read my blog to find out how I’m doing.

I continue to have problems with digesting food. I am losing weight again. I suspect this is more of a problem with my small intestine rather than the large intestine. I have been taking high doses of Nystatin to try to eliminate the candida infection in my intestines.

I had a severe pain in the right side of my face four nights ago. I increased the dose of nortriptyline to help with that. I have been working with a few new professionals to try to get things back on track but I am starting to get discouraged.

My left foot and leg are getting weaker. I continue to have difficulty sleeping. If I were stronger and digesting food, I think I would be doing better but I’m in bad shape.

I have been able to eat more and maintain a stable weight at about 107 lbs. Although I’ve been able to eat more it has translated into more energy to walk but not enough to gain weight yet. I did a test for gastroparesis that came back “normal” but I am definitely much slower than I used to be. As they do not give numbers or data in the report, I have to assume that the bell curve for normal is rather broad. And as I was noticing improvement about a month ago, it is more likely we would have picked up the something below normal in July.

Regardless, I need to work on eating more if I’m to get any type of life back. My mood has been affected significantly and I am hopeful I can improve my sleep, the ongoing case of thrush (mild now) and get the feeling back on the left side of my face. Bowel movements have been more consistent but still far from normal.

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.

by Daniel Ouellet (husband and guest blogger)

Quite a while ago, Jennifer asked me if I would write a guest blog post, and I accepted eagerly although I didn’t know what to write about at the time. I let the idea simmer for a bit. I wanted in some way to portray my perspective on her story, or my experience as a witness to her ordeal and pain. Then it dawned on me that what many people seem to marvel at is that I stayed at her side through this hell, so I decided to write about why I stayed.

Chronic illness is a deal-breaker in relationships, and stories abound about it. A friend openly told me that he would have bailed out if he were in my shoes. In truth though, I never even seriously thought about leaving, and I would venture to say that there are also countless examples of committed partners who stand by their mate. I’ve met a few, so I know I’m not alone.

You might think that acceptance of your lot in life is part of it, but that to me sounds like quiet desperation. Maybe it does carry you through sometimes, but it takes a lot more than that to endure years of set backs, frustration, and tears. I did ask myself at times “What do I need to learn from this? Why should it be my fate to have to live through this? What did I do to deserve this?” You know, the Job questions.

I flipped the table too, and asked myself how I would feel if I became ill and my wife left me as a result. The answer is “shitty”, of course, but “Do unto others as you would have them do unto you” is still far easier said than done. That said, I’m one of those who have a conscience that won’t let them get away with stuff, so for me the Golden Rule applies. Besides, Jennifer didn’t ask for this any more than I did, and her suffering has been far worse than mine.

But at the bottom of it, I stayed, quite simply, because it is the only loving thing to do. It takes a good dose of selflessness to stay, and it has tested my patience and my capacity to love countless times. I should add that I can’t judge those who leave, because I can’t say that I would have stayed under all circumstances. Every situation is unique. What made a huge difference and tipped the scale for me is the tenacity and courage that Jennifer has manifested throughout this ordeal.

And in the end, despite all the arguments, tears, and emotional pain, I have absolutely no regrets about staying. It was the right thing to do.  It deepened our relationship, it taught Jennifer about the true nature of love and perhaps helped her realize that she is worthy of the deepest love, and it taught me a great deal about my own humanity.

When I first started the idea of writing about great life experiences, I was not feeling well and figured I’d never feel great again as MS is a terrible disease. I wanted to leave some evidence that I was HERE and I LIVED a life. The best I could hope for was not to get worse and that’s why I started the drug treatment. Little did I know that some of the people and ideas I encountered along the way would provide me with much more hope and some actual healing. I got to the point where I thought I might be one of the lucky ones who figured out how to stop attacks.

Now that I am suffering another brain stem attack so similar in many ways to the one in 2011, I realize I was wrong. Did I do something wrong? Exposure to gluten or dairy? Stress? Surgeries? Exposure to toxins? Re-stenosis of my jugular veins? I was tolerating the drug well but the only things that really made a difference to how I felt were the TVAM/CCSVI procedure in California in February 2014 , and the change in my diet following the example of Dr. Terry Wahls. After the TVAM/CCSVI, my energy improved, my blood pressure and pulse normalized, my hands and feet got warmer. I tolerated heat better and actually began to sweat.  With changes in my diet, I had quite a remarkable two years, ate food and enjoyed so many things in my life again that I thought were long gone, including exercise, swimming, riding my bike and hosting dinner parties with friends! I even had a glass of wine once or twice on very special occasions. Yet these times were interspersed with episodes of recurring trigeminal neuralgia, pain, stress and trips to Winnipeg for surgery.

Last summer, I recall saying to Daniel that it almost felt like the MS was gone. I was doing a lot of fun and interesting things. I felt mentally sharp. My feet felt normal and the feeling was coming back to my face as the rhizotomy healed. The only thing that persisted was a bit of tingling in my hands from the C5-6 spinal stenosis. But it wasn’t getting worse and actually had shown some signs of improvement with the annual MS MRI scans, plus I was seeing my chiropractor regularly and physiotherapist occasionally.

As I may not have time to go through all of the great experiences and scan photos, I’ll list them in the next post.

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.