Flashback to January one year ago:
I started experiencing difficulty holding a pen and writing. It was as though I couldn't get the right grip on the pen, it was constantly slipping out and I would have to readjust. After writing a dozen or so words, I noticed my handwriting was starting to look like a scribbled mess. I would take a little break from writing and then would resume. My best description to people is to think about being outside in the cold for a long time and then coming inside and trying to write something. That feeling that your hands are clumsy and thick. That is how my right had felt. Clumsy and thick.
Mid-February:
I went to see my family physician. After examining my had she was unable to pinpoint anything specific. I questioned if it might be a pinched nerve. Dino gets that sometimes and has similar symptoms, though his is accompanied by tingling and numbness, where mine wasn't. I was referred to a Neurologist and directed to have my eyes tested.
Feb 20:
I had an eye exam that included a 3D test and the results showed that my eyes were healthy. I was relieved.
March 10:
First appointment with a Neurologist. A nerve conduction study and electromyography tests were performed on my arms and hands. The results were inconclusive and I was advised to return in 6 months or sooner if symptoms persisted. I was referred for an MRI.
March 15:
I have an MRI of my spine from my shoulders up.
May 12:
I have my first ever acupuncture treatment and am advised to return the following week for a second treatment.
May 19:
After my second treatment my practitioner suggests I go back to my G.P. and ask to have a referral for an MRI of my brain and to see a specialist about being tested for ALS. I question why she is making this suggestion and am told that my right hand had less muscle than my left. Later that day Dino and I discussed what had happened, were scared of the possibilities, and started to research my symptoms on the Internet. BAD idea. I started to wonder if I had MS.
May 20:
I return to see my G.P. Although she didn't hesitate to refer me back to the Neurologist she explained that in med school she was taught that ALS typically starts from the feet up. She also shared that my MRI results came back normal.
June 17:
I'm back at the Neurologists, sharing the information from my acupuncture sessions. He repeated the nerve conduction study and electromyography tests as well as some reflex tests. Again, he felt the results were inconclusive. I was referred to a colleague of his in Vancouver for a second opinion.
June 22:
Back in my G.P.'s office explaining that my left elbow and forearm have been quite sore for about a month. I was told it was tennis elbow. I stopped using weights when I did my Jazzercise classes and it started to feel a lot better. She read me the consultation letter from the Neurologist. There was no mention of him suspecting ALS. He did note the slight reduction in muscle response in my left arm though. (It was my right hand that I was noticing symptoms in.) She put a referral in for an MRI of my brain.
July 15: (Matteo's 13th Birthday)
We head to Vancouver for the day as a family. I am seeing another Neurologist for a second opinion. She too goes through reflex tests, nerve conduction studies and electromyography tests on both arms. She is suspicious of ALS and would like me to come back to see a colleague of hers. We do not share her suspicion with the kids. In Italy, 13 is considered a lucky number; although I am not superstitious, I admit that I was holding out that the superstition was true.
July 23:
We are camping with friends outside of Vancouver. Dino and I drive in to see the other Neurologist (essentially a third opinion). I go through all the same tests but she also tests my face and tongue for strength. We are asked to speak with her in her office. She informs us that all the test results point to ALS. We ask what the prognosis is and are told 3-5 years. We ask what we can do and are told there is no treatment for ALS.
I remember sobbing, and repeatedly saying, "But I'm healthy! I hardly ever drink, I've never done drugs (not that I'm proud of this, I've just never tried drugs), I go to Jazzercise 4-5 times a week, and I'm in the best shape of my life, and I know I could eat better as I love chocolate and sweets. This doesn't seem right. I've tried to be a good person, be a good mom, I just don't understand how this could be happening?" The doctor told us that ALS strikes like lightening, there are no known causes.
My mind was a dust devil. My thoughts were a mess. I couldn't catch my breath.
We were left with a phone number to get support. She informed me that there was a support group in Victoria and that I would need to come back in October. Before leaving I hugged her and thanked her. What the hell. I'm a good Canadian and it wasn't her fault I'd been struck by lightening.
We walked out of the office into a gorgeous hot and sunny summer day. I wondered how any of this could be true. They must have made a mistake. I instantly felt as though time was ticking away. I looked at Dino and said I wanted a dog. He said okay.
