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    I'll start with a cliff note version

    I’m a 43 year old female, married with 2 daughters, 17 and 18. I was diagnosed with MS February 2011. However, like many of us, I’ve had symptoms for years and either ignored them or was not given proper tests. Now, my Neurologist and I have agreed that I’ve probably had it around 8-10 years. Over the last decade, I would have these episodes of sickness that would put me in bed for weeks at a time. Let’s see, according to all of the doctors I’ve seen over the years, I’ve suffered from: Mono – twice, Non-specific Hepatitis A, food poisoning, overworked, overstressed, a mini stroke, etc. None of which was confirmed by any medical tests.

    Finally, I lost site in my left eye and I had a good friend who was an Ophthalmologist. He diagnosed me with Optic Neuritis, referred me to a Neurologist and I had a brain and spinal MRI right away. Great news! The results showed no abnormalities. He ordered a spinal tap and I suddenly had 2 family emergencies that I had to deal with. I kept putting the appt off. My mother and father in law were near death and I was solely responsible for their care, financial decisions and estates. Luckily, my mother survived her ordeal and is as healthy as she once was.

    I worked a physically demanding job for the last 15 years. Out in the heat of summer (in South Carolina). I was a GIS analyst in the winter and a shoreline inspector, on our local lake, in the summer.

    My vision eventually improved so I forgot about the spinal tap. I thought the Optic Neuritis was an isolated incident, I was very stressed and chalked up all of my other symptoms to just stress. When things began to return to normal and I started to try to catch up on all of my missed work, my symptoms came at me like a tidal wave. I began having every text book symptom associated with MS. I had lost my balance and depth perception and could no longer drive my boat and company car without fearing that I would cause an accident. I was a liability and I knew it.
    I thought I would lose my job if I didn’t get to the bottom of this.

    I finally got the spinal tap done. A week later, a receptionist called me and told me I had MS and to pick from a list of drugs. That was it. Pick my drug and have a nice weekend. I’m not sure if there is a limit to how long my post can be, but I have more to my story……

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Welcome to MSWorld, maytay! It's nice to meet you and I hope you feel at ease here. Everyone here is so kind and knowledgeable and we all "get it"!

    Having MS for years without knowing it is kind of the norm around here. Many of us are in limbo for a long time. But, for you, the good news is that there are many more DMT's (drug modifying treatments) to choose from. You might want to check out our Medication and Treatment forum to see what others have to say about a particular drug before you make a decision. The NMSS has lots of information about these as well.

    I hope that whatever you decide on will work for you! Many of us have tried a variety of them before we found one that worked well for us. Let us know what you decide on.

    Stay well and come back often!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      What a sensitive way to break the news, Maytay! (Not.)

      Comment


        #4
        Hi Maytay
        I lived in SC for 12 years and despised the heat, but I could tolerate it. It got harder and harder to deal with the last couple of years I lived there, and now there is just no way I could live there. We moved to KS 12 years ago, a few years before my diagnosis. I do miss the salt air and even the low tide smell that most people complain about.

        It's funny that some of us found out in such impersonal ways that we have MS. I was told over the phone by a nurse that my MRI showed areas of myelin damage. I asked if it was MS and she said that's what it looked like. I wonder how many of us were told over the phone and also not by doctors.
        Portia

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          #5
          My drug of choice

          Picking up where I left off...I immediately started quizzing the receptionist of which drugs, side effects, most tolerable, etc. She gave me a list and told me to google them and do my own research and decide. What?!

          I spent a good 18 hours online researching and decided on Copaxone. I had the RX shipped overnight and began the injections right away. Two weeks later, I received a call from that same receptionist to schedule a nurse to come to my house to teach me how to do the injections. I told her I had already started and she got a little short with me about not trying to play doctor. Well, let's see, I researched and picked my own drug, it wasn't rocket science figuring out how to inject it...so I kind of am playing doctor! I didn't want to go another day without getting treatment.

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            #6
            Hi Maytay,

            I had a similar experience with my original neuro; she said "here's four drugs, and I don't recommend one over the other, so read up on it and let me know in a week." I wasn't entirely impressed with her considering she knew my MS results for a week while I continued to leave messages and played telephone tag with her nurse. After a week, the nurse called back saying the doc would call me back that evening before she left the office. She of course didn't.

            The next day I left a message that if I didn't hear back from the doc by noon, that they could expect me in the office. The doc called back at 11:00 and told me the diagnosis over the phone while I was at work, and that I had four drugs to choose from.

            I promptly made a call to an MS specialist for three weeks later and he actually had recommendations for me, one of which wasn't among the four my original neuro gave me. I chose Tecfidera and now I'm on my starter pack with no issues so far.

            I hope you continue to do well and welcome.

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              #7
              Playing Doctor

              I have been playing doctor for years in my household. One daughter is Diabetic, the other has had gastro/intestinal issues (ongoing) for years, so I know the whole song and dance about not being taken seriously, not having the proper tests done, waiting weeks for test results, having disturbing news delivered on the phone or by voicemail. I just lowered the bar and have learned to expect that type of treatment. Another lesson I have learned is that you have to be your own advocate and when your friends and loved ones are going through similar experiences, you need to be their advocates. We've got to look out after each other!

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