New to the forum
- OhKay
- Getting to Know You...
- Posts: 24
- Joined: Mon Jul 27, 2009 2:00 pm
- Location: Massachusetts
- Contact:
New to the forum
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
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
- notasperfectasyou
- Family Elder
- Posts: 802
- Joined: Thu Feb 09, 2006 3:00 pm
- Location: Northern Virginia
- Contact:
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
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
It would be really nice to be able to put links in here
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
- OhKay
- Getting to Know You...
- Posts: 24
- Joined: Mon Jul 27, 2009 2:00 pm
- Location: Massachusetts
- Contact:
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
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
- notasperfectasyou
- Family Elder
- Posts: 802
- Joined: Thu Feb 09, 2006 3:00 pm
- Location: Northern Virginia
- Contact:
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
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
It would be really nice to be able to put links in here
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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:
so that's the latest update
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:
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...: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.
aug 10 i will be getting a requisition for follow-up on my d3 status.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.
so that's the latest update
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
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.
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.
- OhKay
- Getting to Know You...
- Posts: 24
- Joined: Mon Jul 27, 2009 2:00 pm
- Location: Massachusetts
- Contact:
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."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.
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.
- OhKay
- Getting to Know You...
- Posts: 24
- Joined: Mon Jul 27, 2009 2:00 pm
- Location: Massachusetts
- Contact:
My entourage: Rocky Balboa (3yo M), Buddy light (2yo M), and the new addition Dottie (1yo F).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
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
- notasperfectasyou
- Family Elder
- Posts: 802
- Joined: Thu Feb 09, 2006 3:00 pm
- Location: Northern Virginia
- Contact:
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
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
It would be really nice to be able to put links in here
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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