This Is MS Multiple Sclerosis Knowledge & Support Community

Hello! I'm Cece, from Minnesota. Four years ago I was diagnosed with RR MS. The neuros have batted my diagnosis around a bit...first RR MS, then CIS, then back to RR MS, then the idea that it's benign MS. I'm fortunate but even so the MS affects every day of my life. I'm 34 with three young children (DD 7 years old, DS 4, and DS 2).

I have been here to the forums before but it was all the chatter about CCSVI that made me get involved too. My expectation had been that, sometime, maybe twenty years from now, there'd be a breakthrough but that it wouldn't benefit me much because of the damage already incurred by then. I'm impressed by the science behind CCSVI. I have, just lately, allowed myself to imagine a world in which my MS is gone...in which I wake up in the morning and I feel good, all day long, and I have the energy to do things, all day long, and I don't have the fear of disability in my future (or my kids' future) hanging over me.

I was in a pretty good acceptance phase of what cards I've been dealt in life, I find it easy still to focus on the positives of what I have (great husband, kids, enough knowledge of my medical issues to treat them like medical issues and rest as needed, etc., compared to when I didn't know why I was different than everyone else) but I have hope now. Painful wonderful hope. If CCSVI doesn't pan out, I'll hurt for a day or two but I'll be able to let it go and get on with things. But if CCSVI leads to a cure for MS, then my life is changed. I can only imagine being profoundly grateful and humbled for the rest of my (long, active, lesion-free) life.

Hello Cece.


"Painful wonderful hope" CCSVI is indeed. That's what brought me here too.

Painful wonderful hope

That is a great description. Keep that hope alive. I swear there is something to it. I can't wait for everyone to have this option.

Hi. This site is great at making me feel dumb. I'm an educated person but this people here have taught me more than any doctor. I'm so glad you came on board!

Thank you for the welcome. I remember being diagnosed and feeling like, No way, I do not have this...and now I can click around a forum like this and, in nearly every post, someone is talking about the same crazy symptoms that I'm dealing with too.

Wow, Cece, you and I have a lot in common.

I have two small children at home, I am impressed that you have three! Two is good for me (DD 2 1/2, DS 6 months, man I am TIRED!) I have been unable to take my meds (Avonex) for >three years, and wow, now I have this (I like your description of it as painful) hope I may not have to explain "whats wrong with mommy" to my little ones. Wouldn't that be great?!?? I never even thought to dream of such a thing.

The idea that MS is a venous issue amazes me. What would it be like to not have a "dreaded" disease, an "incurable" disease, a disease people like to call "debilitating." "dreaded." "terrifying." Or how about insurance companies?
"MS? NO, sorry, we can't help you. OR we can help you, but for so much money you can't afford it." Do you have any idea what it would be like to tell them to s*** it? Oh, the JOY!

Anyway, enough about me. It is nice to meet you! Its nice to talk to a kindred spirit. Let me know if you wanna talk about the kids and all that. Man, having a toddler is tough. I wish I could take away TV, but then I never get a break. Any ideas what to do about THAT? UGH.

;)

cathyb wrote: I never even thought to dream of such a thing.

Doesn't that just nail it? I know I've hoped that it was all a misdiagnosis...that some drug combo would come along that would be better at slowing progression...but this?! I am still wrapping my head around it and I first heard of it a month ago.

We do have a lot in common. After I had my second child, that was when I crossed the line, where what I had to do in a day was more than I could do. Two is a lot. It was a tough choice to get pregnant with number 3 despite having been diagnosed with MS...and I now have been exhausted for years...but my youngest is such a delight. Now next year my middle child starts kindergarten and I am so excited. I think with just the one at home, I won't be so outmatched.

I used to be better with limiting the tv, and I think it served my oldest well, but since my third pregnancy I allow so much! It helps to remember that I am still in survival mode, you know?

One thing I found, when I was beyond exhausted, was that if I lie down in the playroom the kids love it. I guess because I am near them and their toys and that means I am half playing with them, even though I am just lying there. I cannot tell that story without sounding pitiful but it was a real break-through for me.

My kids, even my 7-year-old, don't really seem to realize I have health issues. They've seen me take my shots sometimes, I guess it just doesn't phase them. It helps that my husband is 100% supportive of me needing to rest whenever I give out, even if it is sudden. So to the kids this is normal...I expect I'll get more questions as they get older but, you know, it is what it is.

The hope is painful because it is so much more than I expected for myself once I got diagnosed and because it seems so well based in Zamboni's research that, you know, I think it is real...and then that becomes too much to think, because maybe it is not.