Why are people having so much trouble getting help?

Today is trigeminal neuralgia awareness day – take a moment to educate yourself about the rare but exceptionally painful condition at http://tnac.org/tnac/ 

By Jennifer Sweeney

About 12 years ago, the left side of my face suddenly went numb, but it went away just as quickly and I didn’t think much of it. I experienced a gradual loss of energy, but I’d been working long hours and trying to build a charitable organization; I figured I was just burnt out. Everything changed in 2010. When I first started experiencing nerve pain on the right side of my face, I was terrified. I didn’t know I had multiple sclerosis yet, but I had looked up trigeminal neuralgia, and I knew people called it the suicide disease. When I looked at what my options were – constant pain or major surgery that involved opening up my skull – I knew why. I was thinking to myself, “My life is over.”

“I had a big attack as we were running to catch the bus after the ceremony wrapped up. I stood at the doorway of the bus unable to move. The bus driver waited as my husband explained that I was in pain. After the worst passed, we got on the bus. I was sobbing. It was embarrassing.” (From Jennifer’s website www.jennifersweeney.ca)

At the time, I worked in a rehab facility with people who suffer from brain injuries, including some people with MS, so I was quite comfortable looking at images of the brain. I was able to recognize that I had MS when I looked at my own MRI scans. I brought this information to my neurologist who repeatedly told me that I did not have MS. He never pulled up my images so we could look at them together. I was furious. You need a diagnosis in order to get help.

There are two ways that a hospital is obliged to admit you: if you’re suicidal or if you have chest pain. After repeatedly being refused care, I walked into the ER one night and told them I was suicidal. I was so close to starving to death that I needed to be put on a feeding tube. So I had to behave like the patient they wanted me to be to access the care I needed.

Speaking at the BC launch reception for Women Against Multiple Sclerosis or WAMS in March, 2015. 

While I was in the hospital in late 2011, I realized that nobody was going to help me. My husband was completely confused because the doctors kept telling him nothing was wrong with me. I lay there thinking to myself, “All right Jennifer, you’re on your own here.”

I had to dip into an inheritance from my mother to pay for new specialists through the private system. Fortunately, my new GP was willing to refer me to the MS clinic where the diagnosis was quick and easy. My neurologist there helps me tremendously. When I realize that I’m one of only 20 people in Canada who neurosurgeon Dr. Kaufmann has treated using the particular procedure I underwent, I realize that my pain really was that bad, and I feel validated.

jenniferandhusband

The point is, you are the expert on what’s happening to you. If you’re being denied the care you need then you have to fight for it. Ask for more tests. Find a second opinion. Do whatever you need to do to be heard. Over the last six years, I was forced to learn the hard way how to get the help I needed.

Visit www.jennifersweeney.ca to read Jennifer’s full story and to learn more about her experience living with trigeminal neuralgia and multiple sclerosis.

Somewhere between 2-4 per cent of people living with MS suffer from a rare condition called trigeminal neuralgia (TN), a severe chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain.

 

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