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Postby OhKay » Tue Jul 28, 2009 7:00 pm

My name is Kay and I'm a 28 yo f, married, from Massachusetts. I have 3 cats, much to the dismay of my husband. I was diagnosed with MS in June 2008 and have been injecting Rebif since.

I've had ongoing sensory and gait problems since July of last year. I had 3 days of IVSM in August, October, and February. My symptoms subsided after the 1st 2 treatments only to return a couple months later. The February IVSM didn't make a dent. It seems like one long relapses that hasn't cleared. Both legs are weak and I rock a cane now full time.

To complicate things, I had to have surgery (ACDF) to repair an extruded disc at C5-6 in March. I have neck pain and left arm and hand weakness. It's unclear which symptoms are from MS, and which are from my neck issues.

I've been a member of BT (as newlyb12def) for a couple years, but they're experiencing technical difficulties again. TIMS was recommended to me by another BT member, who has obviously been moonlighting over here for some time.

I look forward to getting to know you all better in the future.
-Kay
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Postby peekaboo » Tue Jul 28, 2009 7:17 pm

Hi kay -

TIMS has so many topics re:ms that it can keep you busy for some time. I hate to brag but I must say that this is an intelligent as well as empathetic board around. And one doesn't have to know rocket science because there are people here that can explain it to us common folk :?
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Postby OhKay » Tue Jul 28, 2009 10:16 pm

Hi peekaboo,

I'm trying to get used to the set up here, it's quite different, but it seems like it will be easier to research different topics.

I think I'll be busy reading past topics for some time.

-Kay
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Postby notasperfectasyou » Wed Jul 29, 2009 6:39 am

Welcome to TIMS Kay!

It is a bit different than BT, hopefully you'll find in a good way. It took me a long time to digest the site when I first got here. I suppose, I'm still working on that even today.

Ken
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Postby Bubba » Wed Jul 29, 2009 2:23 pm

Sorry to see ya here, But Welcome....You'll find alot of knowledgable people here. This is like my extended family....
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Postby OhKay » Wed Jul 29, 2009 8:32 pm

Thanks for the welcomes Ken and Bubba!

I'm still trying to catch up on reading- there are a lot of topics I don't remember running across over at BT.
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Postby jimmylegs » Thu Jul 30, 2009 7:27 am

hi ok, welcome to TIMS :) i take it from your former username that you were b12 deficient? so was i and so was LoveActually, we have been discussing it recently so you might want to read her questions and answers topic under General Discussion.
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Postby OhKay » Thu Jul 30, 2009 11:23 am

Hi Jimmylegs. Thanks, I'll check out that Q&A.

I first joined BT in 07 through their vitamin and mineral deficiency forum when my B12 level came back at 138.
My levels have stayed in the 600s since starting monthly injections, but my symptoms got worse, leading to a neuro referral and MS dx in 2008.
I'm also vitamin D deficient.

-Kay
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Postby notasperfectasyou » Thu Jul 30, 2009 12:32 pm

Kay,
What kind of D are you taking and how much?

Jimmylegs,
Last time we caught up you were trying a new kind of D. How is is going?

Ken
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Postby jimmylegs » Thu Jul 30, 2009 3:35 pm

hi ken, you mean my latest go-round with my usual cholecalciferol product, i take it? well that's a funny story. should be interesting reading for OK since she is also dealing with D3 deficiency.

let me see if i can find a post that tells it so i don't have to type it again lol
well, sort of - here are some bits and pieces from my orthomolecular regimen topic:

my d3 (cholecalciferol) prescription:
http://www.thisisms.com/ftopicp-44702.html#44702

some late 07 vs early 09 lab results compared:
http://www.thisisms.com/ftopicp-56317-p ... html#56317

recent developments:
d3 is in. 103 nmol/L.
aiming for 50 higher than that.
therefore am once again on 50,000IU/d for 10d. today is day 5.


note, i only did 8 days in the end because i knew i was not starting in the 70s range like i did before... and yet...:

jun 19 labwork is starting to come in.
i actually overdid it with the D3!?!
instead of getting it up to 150 like the first time, this time around it went from 103 to 271 nmol/L!!!
i think this might be because of fixing the zinc deficiency, but i'm not clear on exactly how yet.


aug 10 i will be getting a requisition for follow-up on my d3 status.

so that's the latest update :)
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Postby OhKay » Thu Jul 30, 2009 6:39 pm

notasperfectasyou wrote:Kay,
What kind of D are you taking and how much?


I'm taking 50,000iu (1.25 MG) of prescription D3 once a week. I took the same dose daily for a week as a loading dose.
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Postby catfreak » Thu Jul 30, 2009 6:42 pm

Hi Kay,

So you have MS and 3 cats...Hey me too!

I hope you find everything you need here at TIMS. It has been my home for a while now and there are some fab people here.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby OhKay » Thu Jul 30, 2009 6:52 pm

jimmylegs wrote:hi ken, you mean my latest go-round with my usual cholecalciferol product, i take it? well that's a funny story. should be interesting reading for OK since she is also dealing with D3 deficiency.


My vitamin D was at "10" when it was first tested in April, my neuro said she wanted to see me around "80". I was tested last month and the nurse told me it was "fine."
I take green soft gels for the D3 (Pliva makes them, I think). $10 copay for 4 pills. I didn't even know D3 came in liquid form, but I tend to be more compliant with pills than liquid meds.
My B12 script is 1000mcg IM monthly- I can't do them myself anymore. Sometimes I can get one of my RN friends to do it for me, or my poor DH does it. I'm thinking about going to my PCP's office to have them deal with it.
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Postby OhKay » Thu Jul 30, 2009 7:02 pm

catfreak wrote:Hi Kay,

So you have MS and 3 cats...Hey me too!

I hope you find everything you need here at TIMS. It has been my home for a while now and there are some fab people here.

Cat


My entourage: Rocky Balboa (3yo M), Buddy light (2yo M), and the new addition Dottie (1yo F).
The only once my husband willingly agreed to was Rocky. Kitty number 2 was named after my little scheme to get him to agree (I think I was back with the cat before he sobered up). And I tricked him into number 3 by telling him I wanted a dog- he said he'd rather I got another cat, so I did.

They're such great company, and there's nothing like waking up with 3 purring fluff balls snuggling with you every morning.

Everybody here seems very nice & I love that this forum is so information-based... Thank you for the welcome Cat.

-Kay
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Postby notasperfectasyou » Thu Jul 30, 2009 7:10 pm

So I was going to start by typing "Okay", but I suppose, I have to think now before I do that.

Alright, so the thing is that 6 months ago Kim got a script for 50K of D from Vanderbilt and it turned out that we could only get D2 at the "farm"acy. Kim had been on D3's we get at the Vitaminshoppe and so we got the ok to stick with the D3. Kim takes Carlsons which I an now by in 4000IU's. Kim takes 9000 daily during pulse week and 8000 daily outside of her pulses. I remember a post a while back that Jimmylegs put up that said there was a new kind of D. I thought you were going to try it out. It's very hard to search for vitamin d on the boards. Maybe I imagined it. Ken
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