I’m here too

I have had MS for almost six years now. I never went to websites for support, I just learned to live with it day by day. I was diagnosed January 4th of 2008. Yes, I remember the exact day the doctor told me I officially had MS. It was one of those moments that changes your life forever.

I think what really perturbs me is the fact that they still do not know how the disease is contracted (viral, environmental, genetic). Personally I think that I got mine through a virus. My first symptoms came about two months before i was diagnosed. It was November, I went out to eat, and by that night I was puking my guts out. I ended up getting sick for an entire week. I went to the hospital a couple times because I was to the point to bringing up blood. All the hospital did was give me a shot for nausea. After the puking quit, I had vertigo for four or five days. (This was when I learned the difference between dizziness and vertigo) Well, things calmed down for about a month. Then in December I got this weird feeling on the left side of my face and left arm. It felt like my face had been burned to the point my skin was contorted, but I looked normal. I went to my family doctor had he said that if something was happening to only one side of the body it normally indicated a neurological issue.

I visited the neurologist, told him my story, and he nonchalantly said “you probably have MS or Lupus” I’m sitting here thinking, oh thanks that’s a great way to tell a person they have a debilitating disease. Well, after a spinal tap and MRI, he confirmed MS. From there he gave me two packets of information for two different shots. One for Rebif and the other for Copaxone. He just said pick which ever one you want. (As if I knew a whole lot about this stuff). So, naturally I choose Rebif because it was a shot that was three times weekly.

In the four months I was on that shot I had three different exacerbations. Two of them I went blind (one eye at a time and right eye the first time and left the second). I also spent over a month in a wheelchair. A lot of steroids and rehab later, I was back to normal. The doctor said that I kept jumping back to 100% health because I was so young, but as I got older, it would be harder for me to jump back. Nonetheless, we could tell that Rebif was not the right medicine for me. I switched to Copaxone. After having another flair up with that medication, my doctor sent me to the MS specialist for the region of the country that I live in. He tried to get me to take Tysabri (I know I’m spelling some of this wrong). He told me that I would have to get off the Copaxone for at least six months because if I didn’t there would be a 1 in 1000 chance of contracting a deadly brain infection. I just felt like I would be that 1 person. Of course I know that most people feel that way, but I still told him no. So he proposed that I stay on the Copaxone, but I went into the hospital for one week and got IV steroids and then take oral steroids the other three weeks of the month. I did this for six months. Somehow, doing that caused my immune system to jump start so that the Copaxone would work correctly.

I’ve been on the Copaxone now for five years. As I look back, I think that the Rebif would have worked had I remembered to take it correctly, but I have a crap memory. Due to missing too many days when I was on it I ended up getting the bear hug. For those who do not know what that is, it is when the diaphragm temporarily shuts down and it is hard to breath. But it was more than that, it sent pain everywhere in my body, it made me want to pee, poop, and puke all at once. As well as making my heart rate jump. That lasted about a half hour. Of course this all happened about ten minutes before I had to go to work. I called work and they said I couldn’t call off other wise I’d lose my job, so I told them I’d be about an hour late. After my half hour of hell, I tried to lay down because it just took all the energy out of me. I ended up having a spasticity attack for that lasted half hour I had. I did end up going to work, but I was pooped the whole shift.

Now, even though I look normal, I have to take more medicine than my grandparents combined! Which is one shot and 20+ pills a day. Things must be working though, because I have not had a flair up for years (knock on hard wood).

I just want people to know that I am here, I deal with similar stuff other MS patients do. And if anyone want to talk or vent out their feelings of their woes with MS, then I’m here with a open ear.

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Comments

View Comments (3)
  • Beth
    6 years ago

    I was diagnosed 8 years ago and I found out in a similar way. At first I did have numbness and tingling in my legs which I ignored, assuming it was a pinch nerve or something because I’m a dancer. But then I went out to eat and got some sort of flu, and I was throwing up for days. I also thought I was dizzy because I could hardly walk but realized it was actually a balance issue. From there I went to a neurologist and was diagnosed. Rebif did not work for me either and now I’m taking the risk of taking Tysabri despite the chance of contracting PML

  • NRD
    6 years ago

    What 20 + pills could you be taking?

  • rsmith414 author
    6 years ago

    i take 3 baclophen 2x a day to keep from shaking like a leaf, 3 neurotin 2x day because lord its painful, topomax and magnesium (for heart issues ive had since i was 15) of course vit. D w/ calcium (i hear it is hard for a lot of MS patients to keep up the vit. D) nabumetone for arthritis in the knees, valium for this weird symptom that i get that will cause my body to feel as if it is falling asleep… like the tingling stage before the painful stage when something falls asleep, and it will even go into my ear and down my throat… if uve never had your throat feel like it is going to sleep, trust me, it is soo weird, and a prn pain pill. plus my shot. yes, i know it is a lot, but it keeps me going.

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