Wednesday, January 6, 2010

The Diagnosis

The Diagnosis.
I've spoken to lots of people with MS. The diagnosis is one of the hardest things about the disease. Most people have similar stories. Here's mine.

Four days of MRIs. Lying still in the full body/head tube, eight rounds of tests lasting about forty minutes total. The longest test for seven minutes. No swallowing. If I swallowed it would blur the pictures of the spinal chord. If the tests were unreadable, they'd have to be repeated. That wastes the MRI's time where someone else could be using it, costs tons of money, and means I'd have to go through it all over again. Two minute test, break to swallow, four minute test, break, one minute, break, seven minutes, break, three minute, break etc. for eight rounds.

I did great the first day, the nurse offered me valium, I laughed at the thought - valium? me? really? Ner, I'm a kickboxing instructor, I'm from Rugby mate, I can lie in a tube for a few minutes, no problem. Went in all perky, in denial of what I was in there for. Came out a shaking mess. Not swallowing for minutes at a time, stuck in a tube, faced with some unknown prognosis, feeling physically wrecked before you even start, is hard.

Two rounds of spinal chord MRIs the first two days. A day off, then, two rounds of brain MRI's, the ones with a cage on your head.

By the last day I couldn't get into the room without being high on valium. The nurse assured me that this was common. The chemist said the same thing as he handed me the pills an hour before. They explained that often as the body and mind become familiar with what is going to happen, fear takes over.

Lying in the tube for long periods of time, with nothing to do, no where to go, nothing to look at, listening to clunking, machine gun noises, the potential diagnosis was right there. I was petrified of what the tests are going to show.

The MRIs showed two lesions on my spinal chord at the base of my brain. The lesions were so close together my neurologist couldn't see if they were MS lesions or one large cancerous tumor. That was when I received the: "you either have MS in which case you'll probably be in a wheelchair in twenty years, or you have a brain tumor, which, because of where it's positioned in the brain, is incurable" call. The tests were sent to a specialist in LA who confirmed they were MS lesions. However, in order be given a 100% diagnosis of MS by the American Neurological Society guidelines, there needed to be three or more lesions (multiple), so I required more tests.

The following week I went to Stanford Medical Center for eye tests to see if my optic nerve was inflammed.

I arrived early and found myself at the chapel. I've always loved chapels and churches. I'm not religious and don't subscribe to church, but, my mum is an episcopalian priest; my deceased godfather was a Franciscan monk; I went to church schools and spent a lot of my childhood in church. At high school, during the peak of my partying/drug taking/bad girl phase, I'd spend my lunch hours in the ornate catholic chapel, sitting quietly, hanging in the sanctity and safety of the ancient building. Attempting to balance out the insanity of having a dealer boyfriend, partying as if the world was about to end in one of England's gnarliest cities every weekend, while attending a high-end posh English catholic school on a hill in the countryside during the week.

I was called to the specialist center and took the eye tests. I wasn't worried because I knew my eyes were good. The tests were trippy, took me back to my acid days. Lots of swirly images, psycadelic prints. The results were normal.

The final test. A spinal tap. Spinal tap. Let me tell you right now, this was the most excruciating thing I have ever had done to my body. Ever. In my life. Forget child birth. Yes, child birth is mental, and hurts like nothing else, but you know that something wonderful is going to come from the pain. You're doing something amazing. There's the option of drugs that can help. A spinal tap is just wrong. Medieval.

You lay curled up in foetal position on the bed. Take a deep breathe and the doctor inserts a long, wide needle in your spine to draw spinal fluid between two of the vertebrae. You can't move a muscle. You can feel this massive needle in your spine drawing cool fluid out. You want to scream, grimace, and run away. But instead you have to lie there. Still. If you move you could be paralyzed. You lie there sucking up the pain. Praying for it to stop. Damn.

I was warned about the head ache that would follow the procedure. That was no exaggeration.
Another first. Like the pain from the spinal tap. The head ache was unbelievable. Nothing could make it go away. No pill. The nurse recommended caffeine. But really, until the body regenerated the spinal fluid, nothing was going to help. I curled up on the sofa for 24 hours. Shivering. Like a Ewan McGregor going cold turkey in Trainspotting. Trying to find some relief by moving my body in different positions. Nothing helped. I wanted everything to stop. I wanted it all to go away.

Two weeks later, I'm okay. Had the diagnosis. Had hospital treatment. Three days of intravenous high dose steroids that relieved the symptoms. That knocked me out. Made me hallucinate. Throw up. Made me swear I'd never do them again. And led me to trying Tibetan medicine...A whole new chapter in my life.


Mantra (a word or group of words that are capable of creating transformation) meditation is a wonderful tool to have in your mental/emotional tool box. You can use it any time, any place, any where.

Mantra meditation is the ideal tool to get you through situations such as MRIs, spinal tap - anything stressful in your life.

Take a moment to rest and breathe deeply for three long, slow deep breaths. Ask yourself what you need to bring into your life right this moment. For example: calm, relaxation, strength, focus, balance, peace....Usually it the first thing that comes to us that we need the most. So settle on the word, or perhaps two or three words, such as: "I love me", "I am relaxed", "I am safe" and repeat. Simply say it over and over and over and over and over again silently in your mind. You can sit and do this for a short period of time, say 5-15 minutes, or you can keep on coming back to it, whenever you remember.

Be well.


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