Cic or Ms (results are in)

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Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/10/2008 6:41 AM (GMT -7)   
I went to my appointment after my neuro ran all the tests that a Reumatologist had listed. He combined the larger hospitals list of things they suspected might be a second condition with MS, and put them with the Rheumy's list of labs that he said was what was wrong. He had said I did not have MS but a rare atoimmune def syndrome (not acquired), that has all the neuro's fooled.
 
It was very scary and stressful. Then I got the call from neuro's office that my primary care physician would be faxed the results and go over them with me.
 
Yesteday she (shes a sweetheart) went over all the results and this is what followed: 
(on hospitals concerns)
I'm def in Vitamin D. I asked her my level as Id done some looking around and <8 is extemely low, can clinically present with hip pain and deep bone pain. I asked her my level and she said it was 8.3! I told her that the hospital had told me that it could decrease MS symptoms and asked her if instead of osteo this could be what is causing my deep bone pain (hips have hurt for about 3 months). She said Abolutely!
She put me on supplements of calcium and vitamin D. the D is 800IU. Your not supposed to ever go that high without a doctor as it can be toxic.
 
Next thing was: Vitamin B12 was too high. She said that was fine. It was showing too high because i get the shots. She still wants me on them and says it would only of been a worry if theyd not be giving me the shots and Id shown too high.
 
Next was: Methylmalonic Acid, She said Totally Normal (and I praised God)
 
Next was: Homocysteine serum: She said this was hard to explain but that i was deficient and it was what needed to be normal in the body for prevention of blood clots. Folic Acid is what it boils down to. I had been on it and then had been taken off of it. She says I definitely need it now.
 
Next was: C-Reactive protein (also on Rheumy's list)-Totally Normal (again I praised)
 
Then she came to his list (Rheumy's)
 
Ana: Normal (praise)
Anca: Normal (praise)
Complements 3, 4: Normal (praise)
Esr (sed rate): Normal (praise)
 
however, she noted that they'd left off the circulating immune complexes lab. She rewrote the script for that and said, If this comes back normal also, he's not even in your world, and your certainly not in his!
 
Ive been bleeding so i stopped by gyn's after a fast phone call , they are putting me on meds to stop or slow the bleeding x 3 mnths. If it continues then they will use a newer procedure of removing the endometrial lining (instead of a hysterectomy).
 
 
I'm so very thankful to God that the hospital even mentioned Vit D to me. Id of never known otherwise of how deficient I truly am. Vitamin D isn't as easy to get in your diet. You can get it through some orange juices, cereal fortified with it (not always consitent with their labels), some yogurts fortified with it, Oily fish such as sardines or codliveroil pillsk, eggyolk, and Of course Milk. The main thing is sunshine. Since MS patients tend to run heat sensitive this is becoming more and more of something all researchers are looking at.  I had been eatinig sardines (yuck) , eggs, orange juice w/D and taking a vitamin D supplement at time of testing. So I was very low and unable to raise it with my diet.
 
I'm hopeful for less bone pain now. Especially with Esr being normal.
 
After this last test of Cic , this suspicion will be laid to rest. I do ask that all who pray , say a prayer that this checks normal also.
 
 
thanks everyone,
 
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 1/10/2008 7:22 AM (GMT -7)   
Hey Keira,
 
Thanks for posting.  I have a some contradictory information though.  I was told that Vit. D was fine up to 2000 IU.  I take 1600 a day.  I have regular blood testing (every 4 months) to check for toxicity and other junk.  I have never had a problem with the 1600.  I take 800 morning and evening.  It is the only supplement I take that makes a difference in how I feel.  My chronic vertigo is slightly better when I take the vitamin D regularly. 
 
You are in my thoughts and prayers on your last lab. result. 
 
Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/10/2008 8:02 AM (GMT -7)   
I posted what was the regular recommended amount. It can vary from person to person. I didn't want people to just add it if they weren't sure of their levels or if they do not get tested for toxicity.

When i say the recommended amount it was the conclusion they came to of being the amount needed in the uncontrolled trials that began the awareness of this vitamin with MS. (reread my saved link and found my memory sux lol)

I take over the amount I was given. (but thats just me). Wouldn't want to recommend to anyone if they aren't getting checked.


thanks
kiera

woah, A patient with a vitamin D deficiency from inadequate sunlight or dietary intake needs 1,000 IU daily, whereas a patient with significant malabsorption from Crohn's disease may need 50,000 IU daily. So your right. I recall her saying twice a day. The form she gave me is two tablets in a pack. If done twice a day that would put me at 1600. It would also throw calcium pretty far up there.

Replinshing:

It says with severe def <8, its reasonable to take 50,000 iu, orally twice a week for 6-8 weeks.

For moderate (i was 8.3 so is this where Id fall?)- its suggests 50,000 iu a week for 6-8 weeks

then after patient has been replenished to use

A patient with a vitamin D deficiency from inadequate sunlight or dietary intake needs 1,000 IU daily, whereas a patient with significant malabsorption from Crohn's disease may need 50,000 IU daily.

We never discussed this replenishing thing and now Im wondering if I should call her or just take what I have.

 

She has me using Caltrate 600+DPlus which she did say take twice. Since each tablet is 400 and there are 2 tablets per pack, my vitamin D would be at 1600. (i think the nurse said only take one pack thats why the 800 i stated before confused me)..glad id saved this as my memory isnt great with what i read (as you can tell).

The calcium then would be 600 x 4(tabs) also , bringing it to 2400.

Question for you? What were your levels as far as deficiency when tested? Did they do this replenishing thing with you?

What form do you take now? Caltrate or?

thanks for making me relook at this!

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/10/2008 8:44:12 AM (GMT-7)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/10/2008 8:28 AM (GMT -7)   
I hope you get some definitive answers from the last round of testing. Thanks for your cautionary notes about adding things...even vitamins...to your daily routine without first checking with your doctor! Not everyone needs the same amount, and anything over the regularly recommended doses should always be checked with a doctor, first.

I'm seeing my doctor next week for my annual checkup and I'm going to ask about the B12 and Vitamin D. There's been SO much about both of those on the news of late, I need to ask about whether I should be on them as well.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/10/2008 8:51 AM (GMT -7)   
I went back and changed my post but this is for only my body everyone. As i stated and uppitycats repeats do not add even supplements without checking with your doctor.

I was thinking about you ms. uppity cats. Since you were dx'd a long time ago, I was wondering if they'd ever checked lately anyway, for vitamin D deficiency. I'm glad your going to have this and the B12 checked. It was nice to have that hospital tell me this and in fact find out that they are very correct. It gives me more hope that they are indeed learning alot more rapidly. They told me that this past year has been very eye opening for them.

So glad that your having yours checked. Anything that reduces symptoms for us is fantastic! If yours does test low you might wish to ask them if replenishing is needed or not. I'm still trying to sort this out.


thanks

Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/10/2008 10:49 AM (GMT -7)   

Kiera-

 

I’m so glad to hear about your encouraging test results! I hope this last round of tests will be negative as well, and that you start feeling a ton better once you raise your vit D levels.

 

Sunny


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/10/2008 12:06 PM (GMT -7)   

Hi there everyone, and hi to Kiera...it has been about a week since I posted - and read all of this, and glad that Kiera is gaining some ground on all of this.

The neurologist also put me on 2000 IU of vitamin D per day as well.

I live in Alberta Canada. I watched a program last night on MS, and it has been determined that Canada is the highest in the world for MS, and that the province that I live in is the highest in Canada.

So in one sense this is not good, however on the other hand, seeing that I live in such a suseptable location - all are targeting Alberta for research etc - which overall is good for everyone...

During this program, they included a phrase that Alan Osmond came up with, and I have included it in my daily thoughts - "I have MS, but MS does not have me"

Just thought that I would pass on that tid bit of information..

Have a nice day all,

Gary


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/10/2008 3:16 PM (GMT -7)   
Gary,

What a great post. Thank you for reminding me of that. (ms doesn't have me)!!! and for your caring about my results. Very great support here. Thanks Sunny, bless you and I hope with Vit D I will see great results as well.

Gary, your so right about Canada. It's in everything I read. Ms mags that I get etc. You know first hand from being there and we hear about it all of the time. Last I heard (might of changed since then) Its rate was tripling. Or was 3 times the amount...not sure if I got that right lol.

Your very right that in one way it's not good. For the folks predisposed to getting this disease, but overall great for learning about it. The very reason they came to know about the vitamin d were places like Canada that got them thinking. Which led to viewing inlanders vs coastal persons which ate more fish with vit D. Then to look at basically no MS cases at the equator but the prevalance increases the further you get from it. They did say they thought they could prevent MS with vit D in some cases as well. This was shown to be true in Mice of which they felt were predisposed to get it.
I sure appreciate your input. It's very good for all of us here that Canada has made the researches really look hard at why and then find the link.
This is only the beginning. I think that's major exciting! If finding the Vitamin D link just began, imagine....in a year how much more is discovered. Funding always follows discoveries and vice versa, so I really believe we will be hearing more about this very soon.
The part that struck me the oddest I think was that it was a couple of uncontrolled trials. I think Id always dismissed most things unless there were alot of info and alot of controlled studies. In some cases thats a good thing I suppose.

Im glad that you have your dx and don't have to go through any limbo now, and that your being given the D.
Which injection do you take? (ill be forever curious about these lol).
You might of already said on a different thread but Id like to put injection with face so to speak.

Best of wishes and warm prayers,

kiera

Decided to edit to ask a question. Gary? Which is it. That Canada has three times the amount or that it is tripling. If its gaining ground or increasing , have they discovered why this could be?


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/10/2008 3:38:36 PM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 1/10/2008 9:48 PM (GMT -7)   
Kiera said...
She put me on supplements of calcium and vitamin D. the D is 800IU. Your not supposed to ever go that high without a doctor as it can be toxic
Kiera,
 
Were you upset with me??  I was just saying that I love my vitamin D and that my doctor told me that I was ok with up to 2000 IU.  I was sort of confused by what you said.  It seemed like you were saying that you are not supposed to go as high as 800 IU without a doctor.  I may have misread you though. 
 
I am sorry if I offended you, that was certainly not my intention.  Well anyway, keep on posting!! tongue
 
Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/11/2008 5:14 AM (GMT -7)   
Not at all Grethchen hon. Pls go back and see that I edited my post. You were closer to the right! lol. My memory can be very poor at times (i know others and you can relate to this part of ms). I had to look at the fact that she gave me two tabs to take and their IU then go back to the original place it tells you how much is thought to be correct for persons with a deficiency with MS. Once i did that I edited my post to explain that my brain must not of remembered it correctly. I was thinking if I took two (which is really what the nurse said) it would be 800 Iu's. Also if I realize she might of meant something else, considering there are two tabs per pack and might of meant take two packs daily, that brings me to 1600 iu. I need to call and get clarification. I had read the 800 somewhere else, I know that now. I was only trying to make certain that noone do this without checking with their doctor's as it can become toxic and people with certain conditions (like renal) cannot take this the same way. It's different depending upon your amount of deficiency too. If youd like me to copynpaste the exact words, I can do that for you.

Was never mad at all. You helped me to go get the box and rethink what had been said!!!!! ::SMILE:::

While its true that higher than that without a doctor still stands, it would probably be more correct to say. No amount is ok without first checking with your doctor. We dont want people to help themselves and not knowingly compromise their own bodies.

What kind are you taking? Were you replenished first (higher amounts) or no? What was your level ?

My level was 8.3, so I know id fall into moderate and was close to severe. I'm not sure if she's aware of the replenishing thing. I also have to have this last test done to rule out this other disease as renal involvement would go hand in hand, thereby changing (GOD forbid) my taking of Calcium and of D.


Many Prayers for you,


Kiera

Please read my edit above, I did alter what I said once you enlightened and reminded me!


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/11/2008 5:20:50 AM (GMT-7)


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/11/2008 8:32 AM (GMT -7)   

Good morning, and as well I enjoyed your post too Kiera. Actaully I enjoy everyone's post.

In Canada right now, the rate of people getting MS has tripled in a very short period of time. It is more so in the province of Alberta (where I live) and here, the estimate is that the disease will strike 1:300, which in my opinion is very high.

They have a massive research team here right now, both at the University of Alberta, and at the University of Calgary, and it is my understanding that there are specialist coming from all over the place to narrow in on why Alberta is the highest in the world.

So all in all, this may end up being a good thing.

The drug that I am injecting is Copaxone. I have not had any problems with it so far, and last night was my 22nd injection.  I did hit a muscle the other night, that created a bit of an "ouch" but I will master this task!!!

So to you all, a great day, and a pleasant weekend.

Gary


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/11/2008 2:11 PM (GMT -7)   
Thanks for the response! I'm also having no problems with Copaxone. I can't yet tell if its helping but I haven't been on it long enough to see that.

I can't understand why its tripling. I mean I understand to some extent the vitamin d (sun) link vs location. I don't understand why its increasing the way it is.

That's what I think would be a neat thread, to just see everyone's theories and ideas. For instance, could global warming (and i dont have a formed feeling whether it does exist or it doesn't), be causing this?
Why would it be picking up speed so to speak.

Could there be one of the virus they suspected we were exposed to early back around with more vigor.

I'm just tossing thoughts around here.
Curiostisty killed the cat..and no ms. uppity not cindy<<SEE? i got it right lol.

thanks,

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera

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