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    Home » you can't sugar coat MS

    By Amanda Smyth 13 Comments

    you can't sugar coat MS, an update

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    Last Tuesday I found myself sitting my neurologist's waiting room alone.

    In my horrible gastro haze I'd muddled my appointment time and arrived thirty minutes late. The receptionist made no attempt to constrain her extreme displeasure despite my profuse apologies.

    The kids had gastro the previous weekend and I'd come down with the super-duper immune compromised version on Sunday night. I'd subsisted on a half a piece of white bread and two glasses of gastrolyte in the thirty-six hours since then. Bearhands had intended driving me to the appointment, but he'd fallen foul of the same bug a few hours previous. So I found myself sitting in the waiting room alone.

    I did not have a good feeling about this meeting. I'd had a routine MRI of my brain and spine the week before to check if I'd developed any new lesions. Over the past few months I've had a few returned symptoms. It's unsettling when these reappear - you never know if it's just stress or fatigue exasperating existing damage or whether your condition is deteriorating.

    My Neuro is a nice bloke. He quickly accepted my apology and got down to business. The announced "there are no new lesions on the scan" so routinely that I had to check he was looking at last week's scan and not old results.

    There are no new lesions on the scan!

    This means no new lesions for twelve whole months! There's no real way of measuring whether the treatment is working, but no new lesions is an encouraging sign.

    The whole thing still seems like a dream. Part of me wants to swing from the chandelier and announce my miracle manifested. The other part isn't willing to relax - there's still a chance that new lesions will develop going forward. It's a watch and wait situation, but a hopeful one.

    In the interim, its easier to live with my existing symptoms knowing their only remnants of damage done. It's also comforting to know that I've given myself the best chance of living the life we've planned for ourselves - come what may, I know I didn't leave any cards on the table.

    had any good news lately?

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    Reader Interactions

    Comments

    1. elizabuf says

      December 05, 2017 at 1:08 pm

      possum!! ohmygoodness, that is such wonderful news!! what a blessed relief, and what a wonderful time of year to receive the gift of a little peace of mind...... wooo freakity hoo.

      the collective other mothers are behind you. xoxo

      Reply
      • Amanda Smyth says

        December 05, 2017 at 2:21 pm

        Thanks Buf. I'm cautiously optimistic. I could potentially have one more dose if I get new lesions, but it'd be at the drug company's discretion. In the meantime PHEW, my body hates the treatment and I'm thrilled I don't have to do it again next year! 🙂

        Reply
    2. Nikki@Wonderfully Women says

      December 05, 2017 at 2:09 pm

      That is fabulous news, I’d go with miracle manifesting xxx

      Reply
      • Amanda Smyth says

        December 05, 2017 at 2:22 pm

        Thanks Nikki - its a big relief. Especially as I'd convinced myself it wasn't going to be good news! 🙂

        Reply
    3. Dani @ sand has no home says

      December 05, 2017 at 2:55 pm

      That is amazing news, Amanda! Xx

      Reply
    4. Sammie @ The Annoyed Thyroid says

      December 05, 2017 at 2:58 pm

      Such great news! So happy for you! I know from experience about watching and waiting, but the trick is to enjoy the miracle in this moment... And every moment after that!

      Reply
      • Amanda Smyth says

        December 05, 2017 at 3:58 pm

        I'll take that under advisement Sammie! Thank you xx

        Reply
    5. Ness says

      December 05, 2017 at 4:03 pm

      Yay! Wonderful news. So nerve wracking waiting for results. Definitely a miracle manifested xo

      Reply
    6. Denyse Whelan says

      December 05, 2017 at 8:20 pm

      I held my breath reading this and then exhaled! That is such good news! My good news is that I saw my Prof today who has done both of my mouth surgeries -one to remove it all & put some back from my leg & the other to reconstruct areas ready for teeth. He was pleased with how my mouth is healing & a second skin graft from my thigh which is tucked up in my mouth somewhere and will make my upper lip look better sometime! Surgery #3 in Feb and then onwards towards teeth! Well I do have 8 but some at the top will make eating MUCH more varied! And I loved that little vid of you on the rope swing! Just loved it! Denyse xx

      Reply
    7. Lucy says

      December 06, 2017 at 4:12 am

      That's fantastic news Amanda! I'm thrilled for you!! And hopefully the gastro bug has left your house now!

      Reply
      • Amanda Smyth says

        December 07, 2017 at 8:02 am

        Thanks Lucy - all better now. It took me much longer to come good than the rest of the crew though! xx

        Reply
    8. Seana Smith says

      December 07, 2017 at 11:45 am

      So happy to read this.

      Reply
      • Amanda Smyth says

        December 07, 2017 at 5:23 pm

        Thanks Seana. xx

        Reply

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