Need your opionions

[figuerpa]

How many of you are vitamin D deficient? Do your neuros prescribe you meds or refer you to your PCP?

Just curious cause my PCP did bloodwork when I found out about the kindey infection and they ran counts on my B12 and D levels. Anyway my D levels are at 10 and she said to contact my neuro about it so that he knows it is low and he can treat it.

I call my neuro and leave a message, I called again the next day and finally the nurse calls me back and leaves a message saying that Dr. Rorick said that Vitamin deficiencies are not his level of expertise and that I need to follow up with my PCP and then I called my PCP and haven't heard back as of yet.

Who they he** is suppose to treat this???

Paula

[figuerpa]

Wow my 2000 units daily doesn't even compare to 15000 units daily. I guess I should increase mine. I have also been trying to get outside more to soak up the natural Vitamin D :)

I will talk with my doctor and see what she says

Thank you,
Paula

[carrie235]

By the way....my doc put me on 15,000 iu daily for almost two months.

[carrie235]

My Vit D levels were at 25.  My doctor put me on 15,000IU for almost two months and now my levels are holding steady in the 70's.  I'm maintaining with 5,000 IU daily.  Can't say that it has made any difference in my symptoms, but I know it's important.  I wish they would have tested for this years ago.

[madmelissa]

I have low vitamin D (17) and my PCP prescribed 2000 IU per day, but he mentioned at my last appt. that he will probably up it, as the 2000 is now considered the amount for people who are on the lower end of normal, not people who are seriously deficient like a majority of us seem to be. He wanted to research it a bit to find a proper amount before he changes it.

The Ecctrims conference that Lulu originally posted about had an interesting update about vitamin D. It said that low levels of vitamin D cause the body to go into a pro-inflammatory state. Which makes sense as a precursor to auto-immune diseases. So maybe if you have low vit. D and your body is in this pro-immune state, and then get a virus (such as EBV/mononucleosis) that has a similar protein to myelin, boom, body attacks self.

The link to the short video on this from the Ecctrims conference is here (thanks Lulu!):

http://web.me.com/alanpgh1/ECTRIMS_2010/Day2.html

It's the second video down.

Melissa

[HVAC]

I have 68 vitamin D level without supplements. I have a great diet and spend time out doors most days. I was told by my MS Specialist he only tells folks to take it if they are low. My other MS Specialist did not check levels he just had everyone on it.

Alex

[janine01]

My PCP checked mine after I asker her to run a lab. It was 11. she advised me to take 1000 in the morning and 1000iu in the evening.  I would nevewr have checked if it had not been for this site.

[wiggles94]

One neuro commented that my vitamin d level is low.  I've seen lots of docs, and he's the only one to mention it. Didn't tell me to do anything about it so it must not be that low??  My gynecologist always says to take calcium with D.

[cainer]

No i didnt - i am on medicare it wont pay for that test for d levels.
its the best thing i did-i cut down a few days here and there- even got my sister started she has osteo- brittle bones and she says its just short of a miracal-  it really helped her.i get it at cvs

[Erin0313]

Paula,

   What a pain in the butt! Who cares which doctor write the rx you know?! Just write the darn thing and everyone put it in the chart.

  My neuro writes my rx for vitamin D. She was the first one to run blood work and find it was very low. My PCP would write it without being a pain but it's usually whichever doctor orders the blood work that shows it is low will treat the problem and write the rx.

As for you taking 2,000 units a day no worries there - that's actually a low dose. Myself an many others have been rx 50,000 units per week when our levels drop and others I have spoken to take 25,000 weekly rx plus their normal daily supplement.

When you finally get a return call let them know that you are taking 2,000 and if they are writing a script ask if you should continue your daily with it. Also a good idea to ask if/when they will be rechecking your levels.

Good luck - keep us posted
Hugs,
Erin :)

[Sumanadevii]

Does your neuro know how much Vitamin D  you are taking?  It seems to me that there can be too much of a good thing.  Just curious.

[figuerpa]

Thanks everyone for your input. I will be putting another call into my PCP tomorrow to see what she has to say about it and I will let you know what happens. I have been taking 2000 units a day on my own since I found out but from everything I have been reading on here I need to take more.

Thank you guys,
Paula

[cainer]

Well hi!!  yeh  i started this trial of a few we are on patients like me-its a website- i take mega vit.d3 with calcium there is a difference-than just vit. d its the best thing that has helped me i take  like 6,000 ius  in morn and at 12     it made a great deal of diff.  for the positive!!  -been doing this for over a year-dr wont tell you to take that much they cant.  but it did help.

[drsdonthelp]

Its great that you bring this up, because anyone of my friends that has ms, are all vit. d deficient. I have read that their could be some relation to Vit. D and MS.
I am also Vit. D deficient.

[MonkeyMom4]

Hey there,

Michelle just mentioned to me that you had posted about vitamin d.

I just posted something too. Mine is low (15) and I'm looking forward to hearing from my doc!

I'll let you know whenever I hear something. You let us know when you hear something too okay? =)

I'm so glad I have you guys on here. You make me sane! =D

Hope you hear from them soon!!!

[michelleislay]

when i asked my neuro about this (my vit. d level has not been checked and i was asking if it were prudent to get that testing done) and she just replied that

"we are all deficient and should all be taking supplements!!"

not that i'm advocating her advice whatsoever.  just relaying.  

i think there is are huge rifts in the thinking here from one doc. to the next.

hope your pcp gets back to ya!

[michelleric]

My PCP treats my Vitamin D deficiency.  10 is low, I would call your PCP again.
Michelle

[COBOB]

I'd think it should be the PCP.  Vit D deficiency can effect multiple body systems, not just Brain & Nerves.  It can be treated with over the counter supplements, but levels need to be tracked by your PCP.

Bob