My Story

DanielJennifer

 

I thought I had a pretty nice life — a professional career, a husband and home, friends and other interesting people in my circle.

About 12 years ago, I experienced a gradual loss of energy. I had been working a lot as well as trying to build a charitable organization. I was burned out. A couple of years later, I experienced left-sided facial numbness. After it went away, I didn’t think much about it. Maybe the fatigue was just associated with getting older.

So, I worked from home, tried new things, continued with annual checkups and there was never anything wrong except unwanted weight gain.

Everything changed with the onset of shocks and nerve pain on the right side of face in May 2010. I developed a full-blown case of trigeminal neuralgia after an unnecessary root canal. I was diagnosed with ‘trigeminal neuralgia’ and referred to a young neurologist. Over the phone he encouraged me to keep taking medications that were damaging my liver. Then he lied to me and neglected to put relevant information into his consult notes. I vowed never to see him again. The pain went away and I hoped it would never come back.

But it did.

That was the beginning of 2.5 years of complete misery, extreme weight loss, gastrointestinal problems, psychiatric labels, neglect and abuse in the B.C. health care system.

I experienced being rushed through appointments. I had nobody to help me. But I naively assumed that I would be able to take care of myself as I am an educated health professional.

Before I knew it, I was so desperate for help that I went to an emergency room with my husband and we refused to leave until I was admitted because I was 109 lb and unable to eat without pain.

How could this happen to me?

JenDec31

I remember being in the hospital with a tube-feed and asking the young female resident N. how it was possible that I ended up there. I spent a fair bit of time talking with her so you can imagine my surprise when she barged in to my room the next day and grabbed my feeding tube telling me she was going to pull it out because I was not following the health management plan that my “team” had decided on without including me or discussing with me.

Fortunately, an old friend and my husband were there to witness that and stop her. This resident was simply acting on the directions of the attending physician.

They read me the riot act. I was to be obedient or they would send me home. I was completely powerless in that situation. I had to comply as they were my lifeline. So, I did what I was told but I kept notes and I remember every single incident and indignity.

It took me another ten months after discharge from the hospital to get an appropriate diagnosis. The neurologist I was seeing at VGH ignored two MRI reports that he had ordered, one of which explicitly stated “evidence of multiple sclerosis.” And he even had the gall to tell me to my face that I did not have MS and he brushed off all of my symptoms with a dismissive hand gesture. Fortunately, my new GP was willing to work with me to bypass that negligent neurologist and referred me directly to the MS Clinic where the diagnosis was quick and easy.

After pulling together a team of helpful medical and allied health professionals, I gathered all of my medical notes and files and realized I had to be my own case manager. I filed a complaint to the BC College of Physicians and Surgeons against the negligent neurologist. While they did not remove his license or suggest he retire, my complaint is now a permanent part of his record.

Since then, I have done my best to share my story because it became clear to me that I was just one of hundreds of people here in Vancouver being treated poorly.

In addition, I turned to other sources to regain my health and reclaim my life.

Two years ago, I would not have believed I’d be able to do the things I’m doing now. I am grateful for the opportunity to help people again!

2 Responses to “My Story”

  1. Bernadette

    Jennifer,
    I just read a short amount of this blog after seeing your name in the comments to a Toronto Sun (article Dec.30 2013) on Canada’s high numbers of MS cases.
    I live in south-western ON along the shores of Lake Erie, and 23 months ago I was bitten by a tick at work. Had immediate treatment of 2 weeks antibiotics and no immediate symptoms. I was in great health and had an active/fit lifestyle. Five months later I became suddenly ill with joint pain, nerve pain, stabbing headaches, etc. I was tested for Lyme disease (twice with negative results). Sent to a Rheumatologist in Toronto – who thought I had Rheumatoid Arthritis – but all my blood work and xrays were negative. When I was in Florida that winter I had my blood tested again – where it was showing positive for LYME. The doctors here would not “acknowledge” US results. I sent away to Igenix Labs in CA for a blood test kit and had my blood tested again (by the best lab in the business). Sure enough it showed all high markers and 2 co-infections as well. I am currently being treated by a NY doctor for the last 6 months and my condition has improved 60% from where I was last summer. Neuropathy, trouble walking, limited mobility, frozen shoulders, weak, massive fatigue, and unable to dress myself etc.
    Now my nephew in NS has a wife who was diagnosed with MS 20 years ago. She also decided to take a trip to NYC to get tested. After her blood was sent to the same lab in CA. The doctor went over everything with her and said I have news for you. “YOU don’t have MS, you have Lyme Disease”!! She is currently undergoing treatment (out of country) like most Lyme patients have to. But she has had improvement, although the cost is a lot for them to manage. So whenever I hear cases of patients with MS…I have to wonder if there is a massive amount of “misdiagnosis” going on.
    If you want to check out IGENIX Labs you will find them on google and contact customer service and ask for a kit they will send you. You may have to get a local lab to draw the blood and you may need a doctors requisition. I was lucky to get my dr to sign one and our local lab drew the sample (I live in a small town and it’s easier to get these favors done here where you know almost everyone). I just spent 3 months out in Victoria for the winter and had my blood done by Life Labs there…the BC doctor was not convinced that Lyme is an issue in BC. Wow I thought – how sad is that when I saw more deer and wildlife in my 3 mts there then I did in the last 20 years back here. Also BC is a very active, outdoor living environment and it seems more likely exposure to ticks is likely.
    I hope your health continues to improve.
    Take Care Bernadette

    28 May 2016 at 12:27 pm

  2. Jennifer

    Hi Bernadette,

    Thanks for your comments. Yes, I considered the possibility of Lyme disease and was tested for it via Igenix. There is a community of naturopaths here in BC who help out with the diagnosis. It was really important to me to investigate as much as I could because I encountered so many barriers. I saw Dr. Eric Chan http://www.pannaturopathic.com/

    So, for the time being, still looks like that mysterious beast “MS” for which we don’t know the cause or the cure.

    Cheers,

    Jennifer

    30 May 2016 at 1:28 pm

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