Comments for mslifeisbestlife

Comment on My Mom is Awesome. by Kathryn Rhett

Kathryn Rhett — Sun, 19 May 2013 03:08:41 +0000

Besides the box with mysterious French words and the copy of Alice’s Adventures, this is the best birthday present ever because it’s from you, best daughter, and you say really nice things that I would like to believe are true! Thank you from your old mom.

Comment on Contact Me! by Worries, Concerns, etc | mslifeisbestlife

Worries, Concerns, etc | mslifeisbestlife — Fri, 22 Mar 2013 05:09:42 +0000

[...] Contact Me! [...]

Comment on No More Pink! by MS in the News is Confusing! | mslifeisbestlife

MS in the News is Confusing! | mslifeisbestlife — Thu, 14 Mar 2013 19:00:58 +0000

[...] whatever, good luck with the whole basketball thing, and happy MS Awareness week, everyone! Awareness is a neutral term that means nothing, but I’m glad that people are aware of MS. (sarcasm) (so much [...]

Comment on Fox News Is Sooooo Cute by MS in the News is Confusing! | mslifeisbestlife

MS in the News is Confusing! | mslifeisbestlife — Thu, 14 Mar 2013 19:00:50 +0000

[...] (previous episodes include: Ann Romney being confusing, Fox News being confusing) [...]

Comment on The Woman Speaketh by MS in the News is Confusing! | mslifeisbestlife

MS in the News is Confusing! | mslifeisbestlife — Thu, 14 Mar 2013 19:00:47 +0000

[...] episodes include: Ann Romney being confusing, Fox News being [...]

Comment on I’ve Been There by dlquinn1

dlquinn1 — Thu, 07 Mar 2013 12:19:11 +0000

MS anxiety sucks. I’ve been there. MS is a volatile disease, but the research is promising.

I was diagnosed 24 months ago (at 21) after developing leg weakness & ataxia, altered cold sensation, paresthesia (from bra line to tips of toes), difficulty going to toilet & losing all sensation in my girly bits. I was prescribed Tysabri right off the bat, and tested JC virus negative. My symptoms disappeared within an hour post-first infusion & I’ve experienced no symptoms/relapses since. I continue to be JCV- & will stay on Tysabri indefinitely. It’s a wonder-drug, as long as the TOUCH system is adhered to. If I was to test JCV+ my neurologist said he’d probably put me on Gilenya. We’ll see!

I go to a local MS clinic every 3 months, and it’s a bit disheartening to be one of the few there walking in & out. The thing is, most of the other patients had MS for years with no treatment at all, while I’ve been on effective medication from the start. So, ending up in a wheelchair at 28 really isn’t a thing I worry about at all.

Comment on Would you rather… by dlquinn1

dlquinn1 — Thu, 07 Mar 2013 11:56:27 +0000

I ways wanted to give blood, but never did for one reason or another. Now I can’t due to my RRMS. MS being enough to exclude you from eligibility was explained to me as being because they don’t know exactly what causes it yet, so better safe than sorry. Well, to some extent I still disagree (99% of the time situations needing blood/marrow are more deadly than MS, right?), but oh well.

On a related note, I’m also in eligible for cheaper life insurance based on the idea that MS kills you. Uh, no.

Comment on Scleversary the Second by Kathryn Rhett

Kathryn Rhett — Tue, 05 Mar 2013 14:02:00 +0000

Sclereversary is a good word. Love the blog post, hate MS. If the FDA can’t see past Teva’s maneuvers and approve BG-12 this month, we’re going to have to start making it ourselves.

Comment on One Year Later (ohmygod) by Scleversary the Second | mslifeisbestlife

Scleversary the Second | mslifeisbestlife — Tue, 05 Mar 2013 06:27:45 +0000

[...] been one year (and a day since I’m a day late) since my heavily critiqued (by my father) one year blog post, and more to the point, two years of MS down. Many more to go, unless science gets on their [...]

Comment on A More Science-y Look at What’s Causing MS by Cade

Cade — Thu, 07 Feb 2013 15:58:13 +0000

based on the CDC’s page on EBV, I’d say that they’re reluctant to say that EBV can cause MS. Since other factors also need to be present (a combination of up to 115 genes, vitamin D deficiency) and EBV is basically just the catalyst that sets MS into motion, it would be kind of oversimplified and alarmist to say “Hey, EBV causes MS.”

Just got this paper back last night and my professor’s comment on the last part was “what about the negative effects of steroids?” and he took points of for me not considering that, which is kind of representative of the fact that people don’t want to deal with this issue. Sure, there are negative effects of steroids, steroids suck. But steroids are nowhere near as bad as MS. In this situation, I feel like a lot of people are choosing the easiest way out: denial.