About the Author

Diagnosed in December of 2006 at the age of 27, I have been living with Multiple Sclerosis for six years…

I have been on a number of medications, ranging from traditional injections to less traditional infusions. I have been relatively silent up until now, but at long last, I’m ready to speak out.

On Tuesday, March 15th, 2011, I began taking Gilenya in a doctor’s office. This was not my doctor, but that’s also for the best. My heart rate dropped slightly between the 5th and 6th hour of the observation, going from 84 to 74 beats per minute. However, it rose back to 84 bmp. During that hour I experienced a headache and some light-headedness. Still, the relief that followed was enormous.

I watched in delight as my husband carried the IV pole that sat looming in our bedroom to the basement. I hope it stays there forever. After five years, I am beginning to have hope : )

I wish to share this journey with you. Whether you also have MS, know someone who has the disease, or have a disease of your own…we all struggle with something. This is my story.

 


15 thoughts on “About the Author”

  1. So far I’ve only read one of your posts and I loved it! I just started my blog and in researching other MS blogs, this has been a breath of fresh air! I look forward to reading more of what you have to share! Keep the hope!

  2. Glad I found your blog. I recently was at a medication crossroad. My doctor wanted to switch me from Copaxone to Tysabri or Gilenya. I was too afraid to switch. How are you feeling now and how long have you been on Gilenya?

    • Ms. Scarlet said:

      Hi there! I’m glad you found me too 🙂 I have been feeling very well on Gilenya! Much less fatigue and pain. I have tried Copaxone, but I relapsed after 10 months. I tried Rebif, but I had other negative side effects (Raynards and eye hemmorages), then I was on Gammagard (IVIG) but I had about 3-4 relapses in two years. So I decided Gilenya was worth a try. I was a bit scared off by Tysabri but I have heard wonderful things about it too! I have been on Gilenya for one year, and I have not had a relapse 🙂

      • My husband did. He knew when we got mriared that I had a disease. The specifics were unknown, but he knew I was sick frequently, that it might/would get worse, and that it would interfere with our lives. We didn’t know it would make it difficult for us to have children, or that I would be diagnosed with MS, but he loved, and loves, me anyway. And, when it comes right down to it, I would have done the same for him. We are mriared because we want to love and help each other. The disease is just part of our life. It isn’t fun, but it isn’t a huge factor in our marriage. Sure, sometimes we struggle, but mostly we are happy to be together, and to have the family that we do.

  3. That’s ironic that 10 months in you had a relapse on Copaxone, it was about the same amount of time when my MS specialist told me I had new spots on my brain, though I remained without any new symptoms. She wanted me to switch but I felt it too soon. We live fairly close to each other. I’m curious where you go for treatment. Maybe email me??

  4. Brit Renshaw said:

    I was diagnosed with MS almost 6 years ago. I was a “guinea pig” for a study drug (CombiRx) for the first five years. I am now on Rebif, and feeling great. Thanks for your blog!

    • Ms. Scarlet said:

      Hi Brit,

      Thank you for your message! I’m so happy to hear that you’re feeling great 🙂 Every success story gives me hope and strength to continue the fight!

      I’m happy you enjoyed reading the blog 🙂
      Lori

  5. Denise Tapp said:

    Hi! My name is Denise (Dee works, too) and I was diagnosed in 2004. Started with Copaxone and last year started Gilenya. My initial dose response was VERY similar to yours. I got a lot of crocheting done that day! 🙂 I’ve felt great since. I just finished massage therapy school and am so looking forward to helping those that aren’t as lucky as i to have MS the way I do. I try not to quit on the bad days (I’m kind of stubborn). One day at a time. Love your blog. I just started the process for registering with my local MS Society chapter to become a service provider as a massage therapist. Can’t wait for that paperwork to come through.

    • that treatment was worse than the diesase. For Crohn\’s we have the antibody infusions, called Remicade. Originally for RA, Remicade is considered the biggie in treatments. Doc tells me it is serious stuff. Would mean no pills for me but after today\’s checkup, doc wants to keep me on good ol\’ Imuran. I\’m on a relatively high dose for my body weight but it\’s done right by me for six years and I am off mesalamine so no worries I guess. Imuran also got cheaper last year! Knock on wood I\’ll keep doing well. I hear ya about the allergies! Stupid dogwood trees Keep kicking!

  6. It is so very comforting to be able to relate to another MS warriors words. I appreciate your journey and wish you well.

    I went to NAU for a year while working on my under grad. Flagstaff is a beautiful place. I now live in Mississippi, not so great to keep cool. I have thought of spending the hottest three months of summer somewhere much cooler.
    After being on shots for 9 years I tried Gilenya last March, however it did not work for me. As you know, we all battle this disease in a different way. Glad it worked for you.

    • Ms. Scarlet said:

      Great to meet you, Jana! Thank you for your note and calling me a warrior 🙂 We all are I suppose! Funny about the NAU connection. I did love Flagstaff. Newport is actually similar, but on the ocean, which is amazing, other than the high humidity levels. I’m sorry to hear that Gilenya didn’t work out for you. I hope you find your perfect match. Best, Lori

  7. You seem happy, what symptom of your MS do you feel is the worst thing for you right now?

    • Hi Andy,

      Thanks for saying I seem happy 🙂

      I think my eye sight is the most annoying, constant symptom. Since it was affected by Rebif it’s never been the same again. Other than that, I rotate between fatigue, lightheaded-ness, and trouble focusing. How about you?

  8. Hi there,
    my story is a long one because one. I am 58 and was diagnosed when I was 28 and
    2. I have dabbled in a bit of this and that with this specialist and that, particularly over the last 5 years.
    Brief history- experienced episodes every 8- 10 years apart from 28. Severe when they occurred but returned to same or similar physical and mental health post episodes. Symptoms include facial neuralgia, bracing headaches, tingling down limbs- mainly rights side and fatigue. Worst of each episode lasted maximum 4 weeks. management was over counter headache and pain medication plus cortisone and rest.
    Most recent episode 2006 with a series of smaller episodes on and off to this point (2012). Over this 6 year period there hase been a deterioration in congition, heightened pain in face – now diagnosed as ‘atypical trigeminal neuralgia- with the pain beginning in left temple region down through eye, cheek upper and lower jaws neck to point in shoulder, headaches.
    over the 6 year period I have have predistone, epylim, neuronton, lyrica bla bla bla to little or no avail.Currently on a cocktail of lyrica, ed dep and gilenya (gilenya commenced 2 months ago) Nothing noticeable in change to any symptoms except perhaps a little less tired however still rest in the afternoon because head seems to be swimming by then). I am also on sleeping tablet per night. I think the whole sleeping problem arose from an unfortunate coincidence of experiences in 2006-2008- onset of menopause and depression. Anti depressant is still in my regime as a ‘proactive’ form of management. During the most severe period 2007/8 I made the decision to finish work. I just could not do it all. Had difficulty dealing with that- after so long in the work force and a secondary teacher.
    So this is reply is long and gives no advice however it may be the start of me finding some answers. ps. I have always be active- mainly aerobic work and try to maintain this along with yoga which I love. 1 question- does anyone have acupuncture for facial pain?

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