Vitamin D Helps Early

[kwarendorf]

An interesting finding for those early in their MS journey. Seems high levels of Vitamin can slow progression.

http://health.usnews.com/health-news/news/articles/2014/01/20/vitamin-d-may-slow-multiple-sclerosis-study-suggests

Kyle

[PastorDan]

Hmmm.   Last neuro told me my D was low, but I don't remember the numbers.  However, he told me to take an extra 2000 IU per day.  Since it come in 3K caplets, I take one each on Friday and Sunday nights and on Wednesday morning.  Looks like I ought to quiz the current neuro and/or MS nurse more specifically on this topic.  I've never been retested.

Here's a story about D levels that mentions MS; don't know if I might be duplicating something already posted here, though.

http://www.google.com/hostednews/afp/article/ALeqM5i92B8VQKSB9PvVoP7HdxV8G-9WIQ?docId=b12b6497-39b7-4848-b20b-51e1b6f30e3a

[Joiedecour]

I am not dx'd with anything other than occipital neuralgia, but I was prescribed 1000-2000 of Vit. D at 3rd appointment with comment that it may delay onset of MS.

[essdipity]

I agree that for many of us, big doses of Vit D seem like locking the barn door after the horse is gone. Some but not many of the MSers here have symptoms and get a diagnosis within a few months or even a year; most seem to languish a lot longer. But then maybe few people with 'straightforward' MS post on forums, so who knows what percentage of MSers will actually benefit from this study finding.

I have asked about the need to take D during my neuro visits and have never gotten a good explanation. I'm just told to take it. Hopkins seems to want D values in the 50s, ideally. I take 2000 units a day in addition to whatever's in my multivitamin, and my levels are in the high 40s. They seem satisfied.

ess

[calamfred]

I also agree, Eric. My D level was 13 first time it was checked (I have Lupus/Sjogrens, IC) I am on a dose of 2000iu day, keeps my levels mid normal. It did make a difference in my all over body aches when my levels came up. And even though I don't have MS, it's apparent that having D level in at least normal range is beneficial for health.

I have seen where many people with MS take massive doses of D, and say its made a difference in their levels of disability from the MS.

For my hubby, when he got the dx, he already had numerous lesions in brain and cervical spine. So I don't think he would be categorized as early diagnosis and early Vit D intervention. I know his Neuro told us he thinks if we had known yrs prior that hub's D levels were "in the tanker" and he had been on supplements, it might've made a big difference.
So I share this story, and then encourage others to check with their own drs and make decisions right for them. I admit I also sometimes do the "What if?" But that does no good for hubby or I, so I try and not go there.

Regards,
C

[karryon55]

Good point Eric. I doesn't really matter what's wrong with you having you Vit D levels at the optimum level can only help everyone. It is particularly important to strengthen your bones. You need Vitamin d to absorb Calcium which will help prevent Osteoporosis.

Karry.

[EJNILB]

I was put on 2,000 IU per day. My level was 9 at the time of Dx, which I understand is very low for a male. I've asked several times whether I need to increase the dose and I get the "we don't quite know the benefits of D3 in MS patients...". Even if I didn't have MS, I would think it makes sense to get my level within normal range to avoid other potential health risks. I've taken it upon myself to increase to 4,000 IU per day and may even go to 6,000 IU. Potential toxicity does not occur anywhere near these levels.

Eric

[kwarendorf]

I don't think they fully understand the relationship between MS and vitamin D. Does having MS deplete vitamin D more rapidly than in those that don't have MS Are depleted levels of D an MS causative factor?

In relation to this study, like Tammy, I missed the "early" boat. I'd had MS for nearly 20 years by the time it was dx'd and my vitamin D levels were checked :-)

Kyle

[Guitar_grrrl]

I take 5,000 IU/day.  I first tested low about 4 years ago (nobody had ever tested it before then).  I've been tested twice, since, and with my supplements,  I'm in the "normal" range.  There have been times when I've been away, and have forgotten to take it, but I didn't notice any big difference in the way I feel.

[bubbles_04]

Interesting, I think I will bring this up with my Dr next week. I don't think we ever tested my Vit D levels and I'm not taking any supplements but seems like a good idea!!

[maxthecat43]

I saw a news report about the connection between MS and vitamin D this morning. I've been chronically deficient for years.  They keep putting me on prescription vitamin D, but it doesn't seem to help.  For some reason, I just don't seem to metabolize it correctly.  Maybe it's not helping because my MS isn't "early".

Tammy

[kwarendorf]

"Early" is defined as within 12 months of a first MS like attack. Here is a little more scientific article about the study.

http://www.medpagetoday.com/Neurology/MultipleSclerosis/43899?utm_source=share&utm_medium=mobile&utm_campaign=medpage%2Biphone%20app

[karryon55]

I had commenced the vitamin D3 before my Dx as my levels were always low. A vitamin d & MS study is in full swing over here in Australia. The benefits of having your Vit D at the optimum levels are enormous when it comes to MS. I have been told it needs to be as close to the highest level without going over.

They are hoping that people who present with CIS can commence on the high levels of Vit D & this may help to prevent any further developments. The study in Australia has not finished yet but it will be interesting to see what the outcome is.

Cheers......Karry.

[byyygrace]

Sorry! 20 point increase in D levels.

[byyygrace]

I take 50,000 IU a week and have for about a year and a half. My primary tested my levels last week at it was at 41. She recommended cutting back because I am in the "normal" range.

I saw my neuro today and he told me I needed more, not less! He said 10,000 IU a day. He said if I cut back, I would be in the low range within 2 weeks. He said that it has been shown that for each 20 points (within the normal range) MS symptoms decrease by 50%.

Has anyone else heard anything about this?

[calamfred]

My husband's D level was low, Neuro put him on 2000 iu to start,  barely came up, hubby went to 4000 then 5000 iu a day. Few mos back at Endo appt that Dr did blood work, hub's level was slightly high. Dr told him to drop D for 1 month, repeat bw, as he worried about toxicity. Hubby did do that, and levels were back down in normal range.
However, he started feeling worse, we discussed it, and hub went back up to 5000 iu day.
We also know that his Neuro from the 1st appt diagnosing MS had been adamant about the benefits of high vit D levels in people with MS, and also told us our son needed his D levels checked, take supplement accordingly. Dr also stated high vit D levels can delay MS onset/progression.
Hub had consulted with Neuro when Endo said to stop D. The 2 drs are colleagues. The Neuro actually said do what Endo said!
Granted the Endo truly is an amazing Dr, he's listed on our state's "Super Doctors" list every year, and he is well respected in the medical community as well as he is so caring and helpful with my hubbys mgmt of the Addisons disease. He's an excellent Endo.
BUT, he is NOT a Neuro.. my hub knows how his own body feels, and what may make things better/worse.
He recently had an Addisons crisis, had to f/u with Endo. At that appt he told Dr that he appreciated his concern over his D levels, but he was back on the higher dose and intends to stay on it unless he has symptoms of toxicity. For hubby, the benefits of the D far outweigh the risks of levels being too high.
Sorry this is so long, but we've often recalled the Neuro saying if we had known about the vit D years ago, it may have made a big difference in hubs MS. That's a big statement to make, and one that haunts us... I know we can't go back, but we can share our stories and others can weigh everything and make their own decisions. I wish we'd had this info yrs sooner..

Regards,
C

[ghost39]

I was diagnosed last year but have apparently had MS for 15 years. I take 5000 per day, but not sure if im in the early stages still!!!!

[HVAC]

My Vitamin D level has been good may be that is why my MS has been stable.

Alex

[doublevision1]

ps: I wonder how "early MS" is defined?

[doublevision1]

I was mildly deficient when I was dx'ed six years ago. I was getting no D from my diet or supplements, am not outdoorsy, have been vigilently avoiding the sun since my 30s (don't want wrinkles!) and whenever I was outside, all year long I was covered in a high SPF zinc oxide. A the time I was dx'ed I had been living near the 60th parallel north for several years, also limiting sun exposure. I first started on supplements of D3 at 1,000 iu, and gradually increased as I learned more and more about its potential impact on MS. I'm now at 10,000 iu daily. I got tired of swallowing 10 OTC pills, so my GP prescribes this dose in one little capsule which is great, and is covered by my drug plan It's not very expensive but better than paying out of pocket.  

My current GP's wife has MS. I find he is more knowledgeable about it in general than previous GP's, has a lot of interest in D3 and thinks 10,000 iu is a good idea, even though my neuros have always recommended 1,000 - 2,000 iu. He tests me every six months to ensure it doesn't get too high, though he's very comfortable that it has been tested safe at this dose. I'm currently in the optimum range.

I am very hopeful that it is making a positive difference!

[SarahL2491]

mine said I didn't need it, that my levels were adequate.  I am supposed to stay away from sun anyway, since skin cancer runs in my family.

[kwarendorf]

My level is just over or under the bottom of the range, depending on the day of the week :-) I alternate between 5,000 and 10,000IU/day of D3.

Kyle

[PeninaD]

DD's MS doctor put her on Vitamin D from the beginning.  
Back in July, her levels were lower end of 'normal', but between staying inside away from sunlight for many months, as well as all newer studies showing Vitamin D is important for MS patients, she was put on starting in October, 50,000 units once a week of D2, which last week was changed instead to 4,000/day of D3.  In March at her next appointment, that will be reviewed once again.