Vitamin deficiency: I've been dealing with... - My MSAA Community

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Vitamin deficiency

Fee09 profile image
13 Replies

I've been dealing with a Vitamin D deficiency since I was a kid. I wonder if anyone has read anything about the connection with MS.

I've gone from 500 to 5000 iu over the last 18 months. It seems to be the main thing that seems to stay out of whack. Being extra sensitive to sunlight has made it even harder.

If anyone has a suggestion, I'd appreciate it.

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Fee09 profile image
Fee09
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13 Replies
erash profile image
erash

Fee09 theres a lot out there @ vit D and risk of MS. Mostly correlation studies. Most recommend vit d level b/w 50-70 ng/dl

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Fee09 yup what she said ( erash ) haha l take 4000 mg of vit D . I think most of us here take it. I'm even giving it to my girls for Christmas, so they have no excuse. :)

cassielynn71 profile image
cassielynn71

Yep! What erash & Jesmcd2 both said, lol. I think you may hit the nail on the head w/ the heat sensitivity & getting Vit D from the sun connection. But I think it may be more than that with some after reading a few of the studies.....I personally am on my second round of a 12 week prescription of Vit D since June. I'm thinking I'll be taking Vit. D regularly if this second round doesn't get me back up to acceptable levels.

Fee09 profile image
Fee09

I've been taking vitamin D daily for years but they started upping my dosage about 18 months and everytime I get my blood work done, they increase it again. I used to drink Vitamin D milk in large amounts until I developed lactose intolerance. I miss having a big glass of milk with my lunch. Now I'm tired and taking too many meds. This MonSter sucks

Karen-x profile image
Karen-x in reply toFee09

Totally get the sentiment about taking too many meds. I feel like a drug store is in my pill box. Anti- dep, blood pressure, vit D, vit b12, baby aspirin, fish oil, evening primrose.

shortyPPMS profile image
shortyPPMS in reply toKaren-x

I realised how much money I was spending on med's when they started bowing to me when I walked into my pharmacy (Drug store for Americans).

Sukie427 profile image
Sukie427

My neuro has me on 50,000 units of Vitamin D every week. And he checks my levels often. Apparently Vitamin D does have some correlation with MS but I really don't know how or what.

Fee09 profile image
Fee09 in reply toSukie427

Yep, with my current dose that's 35,000 units a week. I guess it's pretty normal for MS patients

positiveness profile image
positiveness

Yes, I have actually read that taking a high dose of vitamin D such as 5,000 IU a day, is beneficial for people with MS. Obviously it's not a cure though, but it may help with some of the many symptoms.

Fee09, it's MSFighter responding back to your questions on Vitamin D. Vitamin D deficiency plays a key role in MS. I think this would be a good topic to bring up to your neurologist. Most neurologist that i've gone to educational seminars with, support the use of Vitamin D with MS patients. One the last seminar I attended even indicated that vitamin D deficiency in a Mother's third trimester played a large role in whether the fetus would later develop MS. Think about and how scary that is. I am 57 years old and my mother never even probably knew about vitamin D and taking it to make sure her child was healthy. I have three sons the youngest 19 and I didn't know anything about taking vitamin D to help keep my fetuses healthy. The only thing offered for moms to be were pre-natal vitamins and maybe vitamin D was in that in larger doses than I realized. But again, please talk to your neurologist. I'm not a doctor but studies have shown Vitamin D is important for moms to be and people suffering from MS. Thanks glad to talk to you again. Remember we're just a post away.

SueAB profile image
SueAB

I was diagnosed in 1988 and my Vitamin D level has always been low. I have taken RX D-3 and now on 50,00 I.U.s a day. My last blood showed a 90 and my PCP suggested I cut back to every other day.

nwfrugalista profile image
nwfrugalista

My understanding is that low Vit D is very common amongst MS sufferers (and some other auto-immune disorders, for instance Lupus).

Interestingly, I read somewhere that MS prevalence is highest in US in the Pacific Northwest (the marine climate there is similar to that of the U.K.). And I think the U.K. has a higher proportion of MS sufferers than most countries as well.

I lived in Seattle for five years, although my auto-immune condition (SLE, and still under review for MS) wasn't diagnosed until after I returned to the East Coast. My rheumatologist and primary doctor were shocked at how low/nearly nonexistent my Vit D levels were. I was put on a crash course of 50,000 IU twice weekly for 12 weeks (which had to be repeated twice more to get me in the proper range). Now I take a daily dose (3000 IU I think) in addition to the D in my daily.

Maintaining proper levels of Vit D and B12 have been really important for my energy level/ability to keep working.

ddeadred profile image
ddeadred

I've been on Vit. D for YEARS as recommended by neuro... It's one of the recommended homeopathic type treatments for MS. Neuron has me on 5000 IUs... initially when I stopped Betaseron after it tried to eat my leg (necrotic tissue under my skin that erupted--gross! surgical clean-out) then I took a break. 5 years later I started on Copaxone. Betaseron=8.5 years, Copax=7+ yrs. so far. Both have worked to keep away MonSter attacks after a MAJOR one for Christmas 1993 (MS since 1986)... xo Cj

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