8 years since my diagnosis - Primary Lateral Sclerosis

By Christina, United States, February 27, 2016

In the beginning of 2007 I was falling down often. I also began working at a new job. I was 35 and living in Seattle. One day I fell down so hard (outside, on the walk home from work) that I hurt my knee. I went to see my primary care physician, asking to be referred to a physical therapist. My first consultation at the physical therapist revealed there was something seriously wrong. The PT told me to go back to my PCP and to see a neurologist as soon as I could. Thus began almost a year of medical testing. My first brain MRI was in April 2007. I had 3 brain MRIs, a spinal MRI, an EMG (which I later found out was not a true EMG, since no needles were placed into my muscles), a spinal tap, and so many blood and urine tests. I continued to fall down, my ability to walk was going downhill, and despite a continuous progression of symptoms (and an ever increasing fear and wanting and needing to know what was happening to me), all tests done came back negative. In September 2007, I was misdiagnosed with MS because of my age, sex, race, and symptoms DESPITE every test for MS having been negative (and my progression constant). I did not believe that I had MS and when I mentioned that if I DID have MS wouldn't it be considered primary progressive MS? I was told "we don't diagnose people with that." The diagnosing neurologist insisted I had MS and tried to scare me into injecting myself with Copaxone on a daily basis "or I would get much, much sicker, very, very quickly." I refused. I was fired from my job. By this time I was on medications for the spasticity and pain in my legs and was using two canes to walk (though I kept falling down). I had to pack up my life in Seattle and go home. I went home to my mother who was living in upstate New York. I saw an MS specialist who did not believe I had MS - he thought I had ALS. I was sent to NYC and Columbia Presbyterian where I underwent even more tests including an actual EMG, being electrocuted (basically), and having a magnetic pulse sent through my body. I gave gallons of blood for every blood test known to man. On January 31, 2008 I was diagnosed with upper motor neuron disease or Primary Lateral Sclerosis. Since PLS is a diagnosis of exclusion (meaning all diseases they are able to test for have been tested for and you don't have them, they use that and your clinical presentation of neurological symptoms and diagnose you with PLS. The easiest way to explain PLS to strangers is that it is a progressive, degenerative neuromuscular disease, similar to ALS, though it is not fatal. There is no treatment and there is no cure. I was less than 2 months shy of my 36th birthday and was diagnosed with an illness typically seen in people in their 60s and 70s. I was devastated and thought my life was over. 8 years later it is obvious that my life is not over. I live with my mom, who is now retired, on the Oregon coast. We have created a good life together. My FT job is managing my health care (doctor appointments, insurance claims, medications, mobility aids, etc.) I have gone from using two canes to (over time) using braces on both of my legs (AFOs), a wheeled walker with a seat both inside and outside the home, and am currently beginning to use a wheelchair more and more outside of the home. There is really only one organization that is working on trying to find treatments and a cure for PLS (and its hereditary counterpart HSP) and that is the Spastic Paraplegia Foundation. There are varying opinions regarding PLS and whether or not it is a variant of ALS ("benign" or "non-fatal") or if it is a separate disease altogether. There are also varying opinions as to whether everyone diagnosed with PLS (which may be 500 people in the US or up to as many as 2000) actually has the same illness, due to the variance in symptoms and progression. I am grateful for the life I have with my mom. This certainly is not what I wanted for myself or how I pictured my life, but this is it.

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