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Dear Lauren Parrott,

I know you’re scared. The fears that you shared in your video blog ring true to any of us who have faced the unknowns of a new multiple sclerosis medicine.

https://www.youtube.com/watch?v=eS9-nSfvgSI

I’ve been there.

I’ve gone through three major multiple sclerosis drugs over the 35+ years that I’ve been fighting MS. I was a subject in the clinical trial of Avonex — in other words, a guinea pig for a brand-new drug.  Was I nervous? You bet! But my neurologist, who sounds like your Dr. Rossman, was someone whom I trusted. So, I went on that drug for several years and it helped.  My reward was worth my risk.

Then I moved to Tysabri and finally to Aubagio.  As you know, Tysabri is a drug with a very serious potential side effect — the sometimes fatal brain disease called progressive multifocal leukoencephalopathy or PML. But both drugs have helped slow the progression of my MS. Again, the reward was worth the risk.

In December I’m going to switch drugs again. I’ll be starting Lemtrada. I don’t think that I’ve ever been “scared” about any of my drug therapies, but for some reason I am a little nervous about this one. Maybe it’s because some people using Lemtrada have reported some very uncomfortable side effects — I’m a wimp when I don’t feel well. But I’m determined not to let my nerves prevent me from taking advantage of this drug. The potential reward of having some of my MS symptoms reversed seems far greater than the risk involved.

My neurologist told me “the buzz is good” about your new drug, ocrelizumab.  A story on the investing website Motley Fool headlines it as “The Revolutionary Multiple Sclerosis Drug You’ve Never Heard Of.”  Ocrelizumab, which Genentech hopes to market under the name Ocrevus, is special because it’s designed to treat primary-progressive as well as relapsing-remitting MS.

I’m sure that Dr. Rossman wouldn’t have recommended ocrelizumab to you if he didn’t think that the drug was right for you. Even though he’s no longer able to be at your side through this trip, please know you can count on other MS patients, like me, to walk down that road with you.  We’ll try our best to help you through those scary risks so that you can give yourself a chance to reap those rewards.

[More of my columns can be seen on my personal website: www.themswire.com]

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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3 comments

  1. Joy Allegrina says:

    My name is Joy. I was diagnosed with MS almost 4 years ago.. I was taking a shot in my leg once a week with Avonex. For 31/2 years. Then went in for my MRI of my brain.
    I do once a year because my first MRI showed lesions (3)😬
    So I went and did it. The MRI showed another lesion starting.
    I was scared worried. But my Neurologist said I should try a newer drug called Techfadaria.
    I feel a lot better 😃Not as sore.
    I think I’ll always be sore… Unfortunally that’s MS.. But…
    I don’t like taking all these medications but they help me get through the day… It’s hard. NO joke.. I do NOT like the frequent MS hugs. It feels like someone is squeezing me all the way around my rib cage. Not pleasant.. Causes panic attacks sometimes for me anyways. I am severely closterfobic.. Spelling sorry…
    But what helps me is excercises 3 days a week. Heating pad, & baths with emptom salt & lemon & lavender essential oils. Just a few drops. Lemon good for inflammation. Lavender calms your system & eptom salt calms your nerves… And of course candles😃 Maybe some relaxing music or read a book.
    You’ll feel great. VERY IMPORTANT !!! You must stretch and rub massage your hurting area so your mussels can relax after you get your knots out, then use a heating pad… May hurt while doing it but you’ll feel GREAT afterwards😃😃😃👍🏻👍🏻👍🏻 Any tips for me?? I have lesions in my middle of my spine and it hurts constantly no matter what I do… I can’t sleep well.. 😬I walk with a walker mostly but my good days I walk with a cane. My balance is getting worse😬🙁I’m soposed to be starting a new medication called the walking pill..😬Has anyone out there taking this pill? If so could you tell me about it???😃Thank you so much. Much ❤️❤️❤️❤️❤️

    • Ed TobiasEd Tobias says:

      Hi Joy,

      Thanks for taking the time to comment.

      As I guess you know, MS effects each of us differently. Also different is the way in which we all handle our symptoms. It looks as if you’ve found some things that work for you, and that’s great. (Personally, I like your idea of lemon, lavender, salts and massage for the body and reading and music for the mind).

      I can’t tell you what to do about your spinal lesions, unfortunately. But I can tell you about the “walking pill.” I think you’re referring to Ampyra. I used it and I think that it helped me walk a little faster and steadier. Not a lot, but I noticed that I didn’t walk as well when I wasn’t using it. Also, you may want to look at a column that I wrote a couple of weeks ago about the drug Lemtrada, which seems to have a very good effect on some MS patients. Ask your neurologist what he or she thinks about it.

      Best of luck.

      Ed

  2. Kevin Keplinger says:

    Hi Ed,
    I would recommend that she contact Dr. Burt at Chicago Northwestern University Hospital about HSCT. I am constantly amazed that patients aren’t being informed of HSCT as a treatment option. Best wishes, Kevin
    www

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