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Multiple Sclerosis is a chronic, progressive and debilitating disease of the central nervous system (the brain, optic nerves and spinal cord). While it is clear that the immune system is involved, it is not clear whether MS is or is not an autoimmune disease which is why it is often referred to as an immune-mediated disease. One thing that is certain is that in people with MS, the body attacks itself. Myelin is the fatty substance surrounding the nerves in the body and it is it's own myelin, as well as the nerves it is meant to protect, that the body attacks. Scar tissue forms in the areas where the myelin has been destroyed which is how the disease gets its name. Multiple Sclerosis - Multiple Scars. Due to these scars or lesions, messages sent throughout the body from the brain, optic nerves and spinal cord get disrupted which resuts in the myriad of possible symptoms associated with the disease. An important thing to remember about Multiple Sclerosis is that no two cases are the same.
- How old were you when you were diagnosed with Multiple Sclerosis?My diagnosis of MS came in 2003 when I was 19 years old.
- When did you first notice symptoms?Looking back through my medical history my primary care physician as well as the top notch neurologist I see are 99% certain that I was around 9 years old. However, at that time and still largely today, Multiple Sclerosis was thought to be a disease that only adults get. Slowly pediatric MS clinics are opening and doctors are realizing that it does strike children.
- What was your reaction to the diagnosis?I seem to be one of the few people who was relieved and grateful at the time of my diagnosis. As stated earlier, I'd been struggling with odd symptoms that would come and go since I was a child. Neither my primary care physician, Children's Hospital of Pittsburgh, physical therapists or the handful of others doctors I saw over the years thought to look outside of the box. Instead my parents and I were repeatedly told that I was making things up and simply seeking attention. That prompted me to start hiding my symptoms as best I could which in turn made me a very angry teenager. When I finally found the neurologist who would later diagnose me he told me that he was certain that it was one of three things : a brain tumor, ALS (Lou Gehrig's Disease) or MS. Of those three things I'll take the MS. When I recieved the diagnosis of MS I was relieved and felt vindicated. I now had proof that I hadn't been making things up or looking for attention.
- What symptoms have you experienced?Hand tremors. Nerve pain. Spasticity (a feeling of tightness - stiff and rigid muscles). Headaches. Optic Neuritis (reduced or complete loss of vision in one or both eyes). Ocular migraines (extremely painful eyes). Severe fatigue (to the point where I was literally awake for only 4 hours a day). Double vision. Blurred vision. Drop foot (the ankle is more or less paralyzed and drags on the ground). Balance issues. Problems with coordination. Problems with my thought process (commonly referred to as "cog-fog") Heat sensitivity. Color blindness (if you give me a folder and ask me what color it is, the color I will most likely see and respond with is light brown even though the folder is actually yellow)
- What would you say has been the scariest situation you've found yourself in with MS?To date I have had 46 surgeries on my right leg. Multiple Sclerosis and anasthesia are not on the friendliest of terms. Twice the stress on my body combined with the anesthesia have caused the nerves in my chest to short circuit causing difficulty breathing. By far those two moments have been the scariest part of my journey with MS.
- What symptom(s) finally got you diagnosed?I awoke in my dorm one morning, hopped out of bed and landed flat on the floor because my right leg from about the knee down was paralyzed. When the feeling returned to my leg it was some of the sharpest and hottest pain I've ever experienced and nothing seemed to touch it. Without warning the pain would cease and my leg would be numb and paralyzed again. It fluxuated between pain and paralysis. That is when I saw a neurologist who prescribed medication to ease the nerve pain when it was flaring up. He later diagnosed me with MS.
- What tests did they order that led to your diagnosis?I had MRIs of my brain and spinal cord. I had a lumbar puncture or spinal tap (something I will NEVER allow anyone to do again due to the fact that I'm one of the lucky tiny percentage of people where the hole created in the spinal cord by the needle refuses to heal on its own resulting in some of the absolute worst headaches imaginable. I ended up needing a blood patch where they draw blood from your arm and then inject it into the area where they'd done the spinal tap). Evoked Potential Testing (electrodes are attached to the scalp and you are presented with various stimuli and the electrodes measure the amount of time it takes for various nerves to respond).
- What drug(s) do you take to slow the progression of the disease?None. I'm allergic to the C.R.A.B. (Copaxone. Rebif. Avonex. Betaseron) injectable medications. When I was first diagnosed I did start out on Copaxone and tolerated it very well for awhile. 5 years later I had an anaphalactic reaction to it for unknown reasons. I can't take the newest IV infusion medication because it lowers a person's white blood cell count opening them up to infections. It also carries the very small risk of a certain brain infection. Due to the infection history with my leg the risk simply is not worth it. All I take now are various medications that treat specific symptoms.
- Do others in your family have MS?As far as we know, no one besides me has MS.
- What is something you want people to understand about MS?First of all, it's not contagious - I can't give it to you. Secondly, the diagnosis of Multiple Sclerosis changes things but it's not the end of the world. There are far worse diseases striking people down every day. The only way MS can beat you is if you allow it to.