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Postby goatgirl » Sat Mar 14, 2009 11:28 am

Can I just say that MS sucks?! Got my official diagnosis January 6th, this year. I was relieved then shocked...upset, mad, and not so sure what to think now. Maybe I'm floating into the realm of acceptance?! Do you ever really accept it?

I've only had 2 real episodes. The first was in the spring just prior to going out of town so I didn't see my doc. The second was Optic Neuritis over summer and I had one lesion at that time so they just said maybe on MS. Last fall started having memory issues and my fatique got worse. My second MRI in late December lit up like a Christmas tree. I've also had a few odds and ends of the type you're all familiar with, numbness, tingling, the hug, odd pain...

I have a serious needle aversion. I didn't realize it had gotten so bad until my neuro gave me the list of drug options and they all had needles. Worse are the potentially horrible side effects! I'm youngish, 32, and have an active lifestyle. I just started getting into triathlon 2 years ago.

I've got 2 kids, husband, and a weimaweiner dog that gets weird if we don't run. I've stayed at home with the kids for the last 13 years and over the course of the last couple years have gone back to school to fulfill a few pre-req's for a grad program in pharmacy that I was going to apply to last fall. Right now that's on hold.

Anyhow, after extensive reading of the articles, blogs, etc. I decided to go with the Campath trial and some diet modification along with supplementing. Lot of info to sift through but I'm of the mindset that you can let life mow you down but it's much better to grab the bull by the horns and ride!

I've been very fortunate in that my husband is a nurse practicioner and we have friends and relatives who work for NIH. I've also tapped the many pharmacists I've volunteered with over the last two years to help make an educated decision. I want to thank everyone at this site whose blogged about their experience with this drug and supplements! I wish you all the best!

I did my week of infusions Feb. 23rd - 27th. Last two days were exhausting and that lasted through the weekend. I didn't get much of a rash and the small amount I had only lasted a couple hours on Friday. Mostly headaches and mild nausea when I wasn't so good about timing Tylenol and ibuprofen.

Over the weekend I felt crummy, like coming off the flu, and had dysgeusia that got bad. I love to eat so that has sucked. Everything tastes off, bitter, some things somewhat rancid. It's been a couple weeks now and that has improved, I'm not normal yet, but close. This last week my energy level is better. I've started running again and did a ton of gardening. I get tired at an earlier time later in the day. It's been 2 weeks post infusion.

I've been lurking on this site and haven't really talked to other MS people yet. I tried contacting the MS Society here and that was a bust. We did their local walk recently and it was...weird. I think I started having a bit of denial then. 2 months before a group of friends and I all ran a half marathon to celebrate someone's 40th birthday. A month before I ran the full 26.2 miles of a marathon. Now I'm doing walks with a bunch of cripples...and these are my people?!!

I have a great group of support and when we learned of the MS Valentines walk friends and family signed up. Some of the kids asked why there isn't a run, it's just a walking event, I wondered too. So we went and DUH, I don't know what I was thinking, OF COURSE it has to be a walking event, with a lot of motorized carts to boot! That was sorta upsetting. Though I'll say potential immobility doesn't freak me out or bother me near as much as pain, chronic fatique, and memory issues. Not that I want to piss myself either or deal with spasticity! Okay so I don't want anything MS related-lol!

Well, I've rambled. That's me and my MS story.
Jana
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Postby LR1234 » Sat Mar 14, 2009 11:49 am

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Last edited by LR1234 on Tue Mar 06, 2012 1:27 am, edited 1 time in total.
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Postby cheerleader » Sat Mar 14, 2009 12:16 pm

Goatgirl...
Welcome. Glad you took the time to introduce yourself and ramble. It sounds like you've educated yourself, and know what you need to do and how to do it. Keep running, living your life, and identifying with whatever group you need to. You are fortunate you are able to run marathons. Celebrate your health, but realize that MS is quite different for others, and you'll need to be sensitive to that. Not everyone has your good fortune. As a healthy caregiver, I know that down to my bones.

be well,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby goatgirl » Sat Mar 14, 2009 12:35 pm

Good fortune, I don't know. This MS gig will inevitably change my lifestyle for the negative. I'm "healthy", because it's early... Dx within 8 months of my very first symtom.

As far as the marathon, all the running that led up to that was a morning ritual as part of my lifestyle started years prior to MS. 1 week after the marathon I woke up with no feeling in my left leg and darn near fell down the stairs. The fabulous unpredictableness of that caused me to have to cancel getting together with a friend to go run our dogs. Our pupply subsequently chewed a sofa cushion and I spent the day debating things like trying to sell our house in this crappy economy to move to a house with no stairs and will I get the feeling back in this leg?! I was lucky the feeling returned in about 10 hours...that time.

Dude, my world is flipped over...if I offended anyone or was somehow not "sensitive" enough, I'm sorry.

Jana
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Postby Loobie » Sat Mar 14, 2009 12:57 pm

Hey Jana,

I have been up and down on the house thing as well. I finally came to the conclusion that purchasing 2 sets of stair lifts (one for up, one for basement) will be cheaper than the difference between what I think my house is worth and what I could get for it in today's market. And what is it with MS and us runners? It seems like about half of us were avid runners before we got dx'd!?!?
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Postby jimmylegs » Sat Mar 14, 2009 2:45 pm

goatgirl i'm sure there's no reason for offense, just go for it. we have every reason to celebrate victories over this thing, and it's a very use it or lose it disease.
if you're a fighter, be here for other fighters. this is generally a fighter kind of place. i hear other forums are more negative i don't know i haven't gone there. and make no mistake cheer is one fighter of a caregiver.
personally i make a point of trying to do more than i could before i was diagnosed. sure i can't do it as well as i might have before, but you may as well go for it while you can.
so anyway, i'm all about the nutrition thing. forgive me if you know this already, but if you don't stock your body enough when you're working it hard, watch out. you likely know that taste problems are associated with zinc deficiency. so is ms (and a whole slew of various facets of ms, like optic neuropathy). and, with being an athlete.
http://www.ncbi.nlm.nih.gov/pubmed/1147 ... 00m,isrctn
here's a thread on that whole thing, ideal zinc level etc - including links to uric acid level which is also low in ms patients.
http://www.thisisms.com/ftopict-5486.html
i'm really on a zinc kick in my own reading right now but lots of other stuff is really important too, as you appear to know!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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