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Newly diagnosed - sort of.

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    Newly diagnosed - sort of.

    Ahoy all! I say 'sort of' because... well, here's the backstory.

    In June of 2004, I had a bout of optic neuritis. I didn't know what it was, just that suddenly I couldn't see very well through my left eye. I had just gotten contact lenses, and I thought I had scratched my cornea. So I went to see my optometrist, who sent me to a retinal specialist, who sent me to an opthalmologist, who sent me to a neurologist.

    During this time, I was a college student, working full-time, and was waiting for my company to finally give me my benefits (which, due to a technical snafu on their part, came 3 months later than they should.) I was seeing all of these doctors out-of-pocket. My neurologist told me I needed bloodwork, EP testing, and an MRI, and I needed to wait until I had insurance to get all those tests done because I most likely would not be able to afford them without it - and he was absolutely right.

    So I waited. I finally qualified for and was enrolled in health insurance through my company, and three months later was finally able to have my bloodwork, EP testing, and MRI done. In November, my neurologist met with me and told me he thought I had the first warning signs of MS, based on my EP results and the fact that they'd found a small lesion in my brain. I was devastated.

    My mother has Primary-Progressive MS and at the time she was diagnosed, there were no treatments available. At that point, I had watched her struggle with it for 10 years. I remember when I called my parents to tell them (I was a couple hours away at school) my mother cried so hard and apologized for 'passing this gift on to me.' While I was still dealing with all of this, my insurance company told me I had a pre-existing condition, and to have fun paying for all the testing I had had done myself.

    So, I did what seemed to be the logical thing at the time - had a complete mental breakdown, quit school, quit my job (losing my health insurance in the process), moved back in with my parents and became a recluse in a deep depression. (See? Totally logical!) I gradually snapped out of it, and started telling myself 'I'm not really sick.' And I felt fine! My vision had come back, though my left pupil was still a little slow to respond to light - it didn't affect my vision that I could tell.

    My mother's neurologist told her that it wasn't uncommon for the children of MS patients to have benign lesions in their brain (in retrospect - is this even true?! I said something to my current neuro about it and he seemed surprised), so I started to think it was all just a fluke thing and I was fine. I told friends that asked about my health that as far as I was concerned, I was fine, and until I started feeling otherwise/having symptoms I didn't have anything to worry about. This is how I functioned for the next 8 years.

    This past March, I went to see my new PCP (new insurance with new awesome company) because I'd pulled a muscle. I was giving her my history and I mentioned 'that thing back in 2004' and she was stunned that I hadn't gotten a followup in the last 8 years, and said I needed to do so immediately.

    She referred me to a neurologist (who I adore, I like him much better than my last neuro) who ordered an MRI in April. I knew the results weren't what I had been hoping for when I woke up from my post-MRI/lorazepam-nap and saw I had two missed calls from my neurologist's office. The lesion noted in 2004 is enhancing, and I have new ones as well.

    He tried to enroll me in Tecfidera first but my insurance company won't approve it, so I am now on Copaxone - I have been on it for slightly over a month. I have an unfortunate, extreme, and at times almost hilarious phobia of needles (coupled with claustrophobia, this explains needing a sedative for an MRI) so being told neither of the oral meds was an option and all I could do were needley-things was a bit like being thrust into my own personal hell. It's been a month, though, and I don't want to wet myself with fear anymore getting ready for the injections AND I can actually hold the capped syringe to bring it up to body temperature without freaking out so I count that as a huge plus. Baby steps, right?

    I have a loving and supportive boyfriend that is wonderful enough to inject the spots I can't reach well (backs of arms, backs of hips) and together we have a retired racing greyhound we adopted at the end of April. He always seems to know that post-injection time is a perfect time to come stick his nose in my face and get all the petpets! The injections are made slightly easier by telling myself that each day I keep up with the treatment is another day I'm making sure (or at least, trying to) that I don't end up in the same shape as my mom.

    ** 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
    Originally posted by Sarahfax View Post
    ** 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. **
    My sincerest apologies, I did not mean to be inconsiderate.

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      #3
      Welcome to MSWorld, Sarahfax!! It's nice to meet you and hey! no need to apologize - you weren't inconsiderate at all. This is just a standard thing we add to posts as some have difficulty reading large blocks of print (myself included )

      Thank you for sharing your story with us. Sounds like you've had your share of peaks and valleys, like so many of us have. I'm happy that you have come to a stable place - good job, good ins., a great bf and neuro and wonderful mother!!

      Many of us worry if we've passed on the gene to our offspring. Here's an excellent article from MSF by Dr. Daniel Kantor explaining the genetic connection http://www.msfocus.org/article-detai...?articleID=338

      I hope things continue to look up for you. You've come to a great forum here. Come back often!

      Take care
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

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