In the last few years, studies have shown the correlation between vitamin D and Multiple Sclerosis patient may have a direct link in their health. I say this because I read an article earlier today reporting how the Vitamin D lowers inflammation from MS and other chronic pain conditions. I think this is a great article to read, as well as, consult your Primary Care Managers and Neurologists. In fact, I also believe this is another addition to our health challenge too!! The better we feel and how much healthier we'll become as a group!!
Do you know your Vitamin D levels??? - My MSAA Community
Do you know your Vitamin D levels???
Written by
Aldasia1
To view profiles and participate in discussions please or .
Read more about...
65 Replies
•
Yes my neurologist has been having me take large doses of Vitamin D3 for some time now.
dmaskal1 , awesome because many people don't know their levels, and it's very important they know it! I'm glad your neurologist has you taking large dosages. How large is your dosage? Does it help?
I take 5,000 IU each day. Yes, I believe it helps.
dmaskal1 , I'm glad to know this too! I've been taking 4000 IU daily,and I've increased to 6000IU this week, but I'm gonna tone it down; so that I won't overdo it. I say this because I take 1000 mg of B12 and 350mg of Omega 3 with krill oil daily too!
For the past 3-4 months, I've been using these vitamins and my blood tests have been normal, and I've never received this reading from my doctor before!!! I was so happy when my doctor told me this cause in 4.5 yrs, I never had this happen before and it showed I must be doing something right cause I hadn't received this info from them. I received the information to add these vitamins from reading more about MS health.
I don't know off the top of my head, but I'm pretty sure they are where they are supposed to be since I don't remember seeing anything abnormal in my blood tests that are taken often since I'm on Tysabri.
dmaskal1 , I've been taking Aubaigo since 2013, and I hadn't any issue with it.
How long have you been on Tysabri?
dmaskal1 , do you know your potassium, B12 and folic acid levels too? I'm asking because these are BIG helpers to lessen inflammation in MS patients.
Thanks Aldasia1! I'll have to find out what my potassium, B12 and folic acid levels have been.
dmaskal1 , you're so welcome. I'm only asking because it's good to maintain good potassium levels cause it can cause a heart attack if it's too low. Then, your doctor should be prescribing you B12, well at least, I thought your doctor would because that's what mine gave me first, but I added on the rest after reading more about MS health.
Please read more about these levels on your own and check out how they play a BIG role in your overall health. Do you come outside at least 15 minutes a day to get some natural vitamin D( sunlight)?
I honestly don't remember how long I've been on Tysabri but I think its about eight years now.
dmaskal1 , do you find Tysabri has been very effective in your overall health?
Aldasia1, I definitely know that after my Tysabri infusion I no longer have brain fog and I can work more, and, about a week before my next infusion the brain fog starts to return and my energy level declines. Infusions are given every 30 days so just before getting another infusion I know I'm definitely ready to get it. There is a group of 6 to 8 of us who get the Tysabri infusions together at one time in the hospital and we all have experienced the same things. I've had to reschedule my infusion sometimes and even from the other groups of 6 to 8 people getting infused at the same time I find everyone experiences the same things as I do. I do not know how well Tysabri infusions remediate MS symptoms other than brain fog and fatigue. I take other medication for my bladder and bowel incontinence. I take another for my emotional stability. I'm still taking medication to improve my concentration. I'm also still taking medication to improve my stamina. Most importantly I'm taking medication to prevent Grand Mal seizures I started to experience about 15 years ago, though I don't know if they are related to MS my MS neurologist prescribes the anti-seizure medication I take.
Most of us take it already
I take 5000iu vitamin D3/day, my level is 54 last labs
For ms higher than ave. levels recommended 50-70ng/dl (normal for non-MS 30)
Vit D is a fat soluble vitamin. So can accumulate. Potentially toxic. Be cautious if levels = or > 100
All above is based on my now swiss cheeses memory, ⚠️
erash , that's good! My level last I checked was 56, as well as, my folic acid and potassium levels too!! All my levels are Normal, and I'm ecstatic!!
erash , do you know your potassium,folic acid, and b12 levels? I'm asking because these are BIG helpers in keeping MS inflammation levels low!!
Potassium is fine b/w 3.5-4.5 per most standardized labs
No recent folate levels but theyve been fine in past
B12 was a problem for me. Low normal in the 300s. I now self inject 1000mcg each month and take daily b12/folate sublingual. Finally got a good B12 or actually high @ 1000
B vits are water soluable and generally not problematic if exceed normal levels (1 exception B6)
Speaking of b vits, biotin, high doses, generally by compounding pharmacy are having success in treating MS. PPMS research very promising.
Do be careful as can interfere with thyroid labs (not thyroid function) and does interfere with some other meds. Stop taking biotin for 48 hrs prior to getting lab work done. False abnormal labs could cause your doc to erroneously change your med dose.
Enuf yakking from me for now 😝
Hi Erash, you're the ms nurse, please can you explain to me in layman terms, why vitamin D is so good for ms I take 1000 IU daily, my doctor says that is enough, many thanks Jimeka
Hi jimeka i think there are theories related to inflammation an precursors of o certain important enzymes but if there is an exact reason, I'm not aware or I don't remember what I might have read....
Is your doc checking your vit d levels? If so, 1000iu maybe all u do need.
Thank you Erash, whenever I have my levels taken I am always normal, so he thinks the amount I take is enough. If I didn't take it I would be low. I don't want to overload if not necessary, thanks again, Jimeka
Hi Jimeka, in Neurology the minimum dose for MS is 5.000UI. Vit D is not "a vitamin",it is an hormone with hundred of functions in our body special in the brain for inflammation, atrophy and neuroregeneration, immune support, etc. Prevent dementia,etc. I take between 5,000 and 10,000UI. My blood level is in the normal range because I do not get sun light(heat). All the others I am already been taking B12, folic acid. The 1,000UI is too low, not update.
Thank you Miriade, appreciate the information. I will follow it up with my neurologist at my next appointment. Have a good New Years, blessings Jimeka
jimeka yep, vit d is actually a hormone precursor since it can be made in the skin from UV light. Def. speak with your doc re. Dose and know your levels. I think There are still varying thoughts on best level and dose but most Ms vit d research is done w/ high doses 5000 or higher
Miriade i try to follow the research on this. Do u know if there are conclusive studies on the best dosing? Perhaps I missed something?
CalfeeChickCommunityAmbassador
I'm taking 5000 IU a day and doctor was pleased with level at last week's visit.
CalfeeChick , I'm glad to know your doctor was pleased just as you were too!! Since you've been taking it how have you been feeling? Do you take B12 and Omega 3 with fish oil as well?
CalfeeChickCommunityAmbassador
Yes, I do take many vitamins and supplements. Multi-vitamin, B12 and B complex, .81 baby aspirin, gloucosamine/msm, fish oil. I also take ginger root and tumeric in capsule form for anti-inflammatory use. Not done yet, I also take calcium, vitamin C, Magnesium and Biotin. I space them out during the day so that my body can absorb the benefits. My arthritis definitely feels better. As far as the MS is concerned I feel pretty good in the mornings, but by 1-2PM, I feel tired, foggy and stressed for no reason. So it becomes nap time. Right now I decided to check in here to relieve my stresses. I'm a firm believer that these do help. I don't know why, I've always been easily stressed and the B vitamins definitely make a difference for me. I've had aggressive erosive osteoarthritis since my mid-thirty's, and my supplement make a difference there besides the Celebrex for the OA. Neuro is aware and doesn't seem to think it's a problem.
CalfeeChick , wow, you're awesome!!! I'm so happy you're so aware of your body!!
I advise you to start checking the interactions between your medicines. I say this because you don't want them to cause issues later. You can do this by downloading on your smartphone devices or tablets the eprocrates application. I find this application to be awesome when I wanna know the interactions between my medicines.
In addition, I'd also like you to check out sesame ,frankincense, and lavender oils. By mixing the frankincense and sesame oil ( 1 part each together)you can massage yourself daily to alleviate any aches and pains. Now, the lavender oil you place it on your heel to relax and get some much needed rest. I know about this one because I've gone to several war tours and I have a hard time sleeping at night.. this really help me, and I know it'll help you too!
CalfeeChick ive tried the turmeric capsules. They cause heartburn for me. Do you experience this? What brand do u use?
NaturIe's Bounty, 450 mg. I also take the Ginger Root at the same time. Both are for inflammation, but the ginger also has tummy calming properties. I believe I got these at local Walgreens where I get most of vitamins. I do possess what they call and iron gut, not much fazes my tummy and I don't recall any heartburn since I was pregnant. (she turns 42 today!)
thanks CalfeeChick
I will check that out. Ginger great for nausea. Unfortunately, no iron gut here 
Ok erash, I went to gym and did 4 different leg machines and rode 2 miles on a spinning bike! I'm started before New Years. Pool was busy so no pool today. Next time.
I forgot (foggy here) that I tried brewing a ginger root/tumeric tea that was bitter, stinging even if you used allot of honey to sweeten it.. That's why I started with the capsules.
When I asked my GP here in UK if it would be wise to check my level she declined ! ? ! I don't think she liked me making suggestions.
angelite , that's not nice! All you'd like to know is how your current health stands. That's all!! How hard is that and they shouldnt get snappy about that question.. goodness!! I'm sorry Angelite😉
We all need to be pro-active about our bodies and tests, medications. Most are surprised at 68 I only have 2 prescriptions. My husband has only eye drops for glaucoma. Thank goodness for the internet and the research available to us. Just limit yourself to 1 or 2 sites for information otherwise it's a brain overload of opinions..
CalfeeChick and of course u need to assess the credibility of the web sites...
angelite , come on now, I'm not trying to cause any grief in anyone's life when I ask questions such as this one. In turn, I just wanted everyone to know more about their fluids levels, and how they can make you feel better; thereby lessen the effects of MS symptoms because the medical community is starting to evolve more towards holistic/ simplistic measures. I say this because they're focusing more on the problem and how to fix it, rather than, medicating now and it's a more proactive move!!
I think this is awesome because they're moving more towards vitamins and healthy eating. The medical profession is realizing how the human body can actually fix itself if it's given the right tools to do so. I find this to be very impressive!!
Sorry if it was not what you wanted. I fear that knowledge and treatment in the UK is not as advanced as in the US, so many of us may never have the chance to have our levels checked or take supplements under supervision. x
angelite , no it's okay with me but I'm just concerned about your welfare. I'm not pleased with how you seen not to have a voice in your healthcare, which is not cool at all, because you're the one that's living with MS not the doctors. This is why I think they should freely supply the answers to your healthcare needs and questions.
I asked the question about the vitamin D levels due to the article I read earlier, and its importance in minimizing inflammation. This is why I posted it! Can you change doctors, so that, you're provided better healthcare needs and questions??
I'm awaiting results of scans from early October so not yet diagnosed yet. In UK, under the NHS until formally diagnosed you do not 'count' as such, so have a problem being taken seriously or accessing any help, unfortunately.
I've just had a bad virus over Christmas which is getting better but the 'temporary exacerbation' of symptoms is now getting worse. My leg power/balance/core have all declined meantime and I just fell down randomly in the hall - I'm a bit worried !
Who am I gonna call - Ghostbusters ? Lol ! : )) Nevermind, I'll have to see what happens. If I could afford to pay privately things would move quicker. I have read good things about vit D and its importance in MS, so would like the chance to have mine tested, rather than self supplement on a 'guess'.x
Really sorry to hear about your recent illness and apparentMS reaction to it, @angelite. I hope you didn't injure yourself in the fall. Praying you get an answer soon. I understand how frustrating that can be. If it is MS, I hope you can start treatment soon 💕
Thanks, Tutu. I'm just disappointed that my silly immune system, having done a great job at fighting off the 'evil virus', now appears to have lost it's marbles and is attacking me again ! Fortunately I don't weigh much and went down after some graceless staggering on some rubber matting near the door : ) x
angelite , I'm sorry you're up in arms with your upheel battle with the hospital, as well as, not actually knowing your diagnosis. I don't particularly like and I know you don't either how your doctor have you waiting!! Whelp, Angelite in the meantime I suggest you choose foods that'll help with inflammations.
Below I provided a link I use to help me remember what foods that'll help reduce any inflammations.
angelite u bring up good point about the differences in healthcare systems.
Sure, we may have a consumerism system in USA that benefits those that can afford. Many however receive no healthcare.
So universal h.c., NHS provides a level of access to all. But that level may need to be lower ? In order to provide to all...
At least that's my understanding
There is simply not enough money to treat everyone, Erash, so understandably strict priorities have to be made. It is rough on those who are progressing markedly in disability while waiting for tests/diagnosis. A timely intervention may have prevented this and kept them employed for longer, so they were not further draining the welfare system by losing their jobs and having to claim disability. x
angelite good point and interestingly I read an article just yesterday about the significant increases in NHS $ for disability (except the article said since WWII so I wasn't that impressed as I am sure the system and disease treatment is dramatically different since then.) nonetheless, early treatment can certainly make big differences.
Yep, my doctor has me on high doses of vitamine D3 also.
Jesmcd2
I had been taking fish oil with D3 in it OTC purchasing from the local Walmart or drugstore in addition to 2,000 IU Vitamin D3 separately. I never noticed it made much of a difference and when I had my levels checked about a year ago it was 31. I too was concerned and had read the benefits of vitamin D levels. I began buying all of my vitamins from online sites that offer "raw vitamins". The best reviews were for the maker called Garden of Life" and I began taking that brand. I started out with the same dosage as I was taking OTC of 2,000 IU for the vitamin D3 and 6 weeks later my levels went up from 31 to 41. I also take the raw Vitamin of fish oil caked Ballena Nelle Omega 3 Fish Oil. I had my D3 levels checked a second time the next time my infusion nurse drew blood and my level was at 55. I started buying the 5,000 IU and have been taking those now as they were a better bang for the buck. But I also am careful in that I make sure I'm not poisoning my system with too high of the levels. I forgot to have the level checked theckast time they took blood for my Tysabri infusion so currently I do not know my level. I cut back to 3 x's a week taking the 5,000 IU and after I have my next blood draw I will find out again what my level is at. I recommend switching to the raw vitamins as they have no fillers and you receive the full benefit from taking them. Be very careful where you buy your vitamin B12 at as well. There is arsenic in most of the brands you can buy at the local drug or grocery stores. They made me super dizzy and I felt nauseous. When I realized they had arsenic in them I immediately stopped taking the B12. If you can find a form of the raw B12 also check to see if they contain aresenic before purchasing them. I also take the raw cucurmin for anti inflammatory vitamins as well as the fish oils. Check your levels often as you don't want to become toxic with any vitamins.
Jesmcd2 , that's an awesome outlook! I'm so happy you're monitoring your levels because it can cause problems if you don't do so. Are you taking Omega 3 with fish oil capsules as well?
KrittyKat60 didn't know l was part of the conversation 😅 As far as any vitamins go, you still need to check with your PCP and/or Neuro. As they can cause interactions with other medications. You can even ask your pharmacist and they will be happy to help😊
This goes for everyone! Also like erash said verify the website!! I don't care where it came from. Anyone can make one anymore. So make sure it's trustworthy! And stick to a cpl. To many will overload you.
The advice is awesome that everyone is giving 😊 but just because it's good for one person doesn't mean it's right for the next.. So please talk to your Drs beforehand 😊
Jes🎉
Sorry Jesmcd2 my reply was meant for @aldasia. Jes you can ignore.
@aldasia I was replying to your question regarding checking Vitamin D levels and others brought up more vitamins. I've found the raw vitamins have been way more beneficial and are not full of fillers. If you have ever tried the sublingual liquid Vitamin B12 I discovered they do have cyanide in the ingredients listed. I think I said arsenic earlier but it's actually cyanide. When I was taking it I noticed I was dizzy and felt disoriented an nauseated. I did a little research on the B12 and found out most of the B12 sold in the drugstores have the ingredient cyanide, also listed as cyanocobalamin. Just be sure to check the label before purchasing. 😜👍
KrittyKat60 , yes you must check the label, but I only received B12 from my PCM and I added the rest of my vitamins myself. B12 was the only vitamin I received from my doctor, and I couldn't understand how my they got so antsy when I take my own vitamins daily. It seemed like I stuck them or questioned their expertise, but I guess I'm not supposed to read and learn on my own. This is why I asked the question about if people knew their Vitamin D levels due to my own issues with my own experiences. Lol..
Aldasia1
Hey it's KrittyKat60 here again. No doctor has ever offered me the vitamin B12 shots. Wish they had. I may ask my primary tomorrow when I go in if he can check my B12 level as well as a few other things.
Thanks for listening. I just sent you a long history of the vitamin D connection to pregnancy. It matches my situation only at the time I didn't connect the dots.
KrittyKat60 , no I didn't receive the shot, but I receive the capsule monthly.
I think it's an awesome history because if doctors would've been more in tuned with babies and their mothers' welfare; as well as, businesses when it comes to environmental issues then I think MS would be a thing of the past.
I've always said and still believe MS is an environmental and stress related illness not family oriented! I say this because many issues we face today are based upon what we eat! drink, and what we're exposed to daily. At least in my case, I redeployed with MS from Iraq and there's an alarming rate of service members redeploying from overseas with neurological issues such as MS, lupus, myasthenia graves, fibromyalgia, and others. I'm amazed to read stories from other service members about their struggles that it saddens me😌
My neurologist has prescribed vitamin D for me on a daily basis. I take 2000 units daily with 5000 units once a week. This seems to help because the lesions Have not advanced for a few years.
Aldasia1, it's Fancy1959. Every neurologist i have ever spoken to at the neurologist I visit regularly or guest speakers at the multiple MS Seminars I have attended have advocated forr Vitamin D for MS patients. A recent study that I read in one of the MS magazines totally amazed me. New research show acccording to the article that vitamin D is extremely crucial for pregnant women especially in the third trimester. If the vitamin D levels are low during that vitally important trimester it can lead to MS development in babies later in life. I think about my mother and all the mothers that had babies in the 1940's and 1950's that had not a clue about vitamin D levels and extra vitamins for pregnancy, etc. Then I look around to all the ladies and men that are in their fifties and sixties that have MS and I wondered about that correlation. I wish there was some way we could go back and figure out what our mothers Vitamin D levels were but I know that's impossible. Nevertheless it is an extremely interesting but unsolvable item to ponder. 🤔
Fancy1959 , well do you know how important vitamin D levels are to multiple sclerosis patients?
I'm well aware many doctors don't mention vitamin D to their patients cause I wasn't told by mine, but I'm an avid reader and I brought it upon myself to do so😁. When I did so, I must say my blood tests changed dramatically than they normally had in over 4.5 years, and my doctors were alarmed. Then, I was asked what was I doing differently, and I explained I began taking vitamin D3,omega 3, and B12 capsules. In my opinion, I learned a good bit of this information by reading MS magazines and articles about patients suffering with the illness. Don't you think it's effective to know a patient's health is better due to simple capsules, and eating healthy?
Fancy1959
KrittyKat60 here. That's amazing you made that connection with pregnancy. I say that because when I was pregnant with my 3rd and last child in 1988 that is when I noticed what I now realized after my dx 19 years later l, this was when I began having the severe fatigue, heart palpitations, huge drops in blood sugar levels and later foot drop, waves of dizzy spells and the list goes on. I was 31 yrs old, pregnant and at the time my Mom was dying from lung cancer, she passed away in April 1988 before my son was born. 😪
After my son was born in Oct I was never able to recover from that fatigue. I never felt the same again. I believe now the fatigue was the first sign of MS rearing its ugly head but because he was my first and only C-section baby I blamed all those symptoms on the C-section. I also had lost a lot of blood right after he was born, not quite enough for cause for a blood transfusion. Thank God. The blood loss was due to my uterus unable to contract properly, that is what my doctor told me at the time. They gave me a shot of something with this extremely long thin needle directly into my uterus to make it start contracting to stop the excess bleeding.
About 2 years later I still had this severe fatigue where I basically slept all the time. I went to my doctor in May if 1990 because I was falling against the walls at work. My co-worker was a kind elderly lady and advised I go see a doctor because it literally scared her that I was falling against the walls. I went to my doctor and was told I was anemic, that was the reason for my extreme fatigue and dizzy spells. It made sense at the time. I asked why I was anemic and he couldn't give me an answer just told me to take iron tablets until I get my iron levels back up between 13 and 14 because they were at 5 when he ran that test that day. That was in 1990 and from then on it was all downhill. Due to 2 separate bouts of dibilitating dizzy spells that lasted for 3-5 days in Sept 2005 and another in Sept 2006 I knew there was more to this and became more aggressive and determined to find out what was wrong with me. It was Sept 2007, the day after Labor Day, when I was finally dx with MS. I was shocked because I knew nothing about MS and it was the furthest thing from my mind that this was the cause.
Hi Aldasia 1, I have been taking Vit D at least 5.000UI to 10.000UI, but because I am not exposure to sun light ( heat intolerance), my blood level are around 58... I know I am in the average level but should be in 72... for better results. By the way, Vitamin D has more than 100 functions in our body, and it is an hormone.
Not what you're looking for?
You may also like...
Do You Need More Vitamin D In The Winter? 4 Reasons To Consider
One of our blog members (RN who does't get a flu shot) told me she ups her vitamin D intake in...
Vitamin D
I am sure all of us know about vitamin D (and most likely all of us were vitamin D deficient at...
Vitamin D toxicity
I've been taking vitamin d supplements for a while now. In the winter time I take 10000 IU in the...
Excess Vitamin D
I just read an interesting fact while taking a quiz on vitamins and minerals which was presented on...
Do you ever feel like this?
This was posted in Positive Living with MS today.
https://youtu.be/5Ua-WVg1SsA
Trying to discern...
Link between High Iron Levels and MS
I have COVID! 🥴
Unnumbered post More to my technical question 25 Jun 2020
