Hi, I am a 50 year old, diagnosed with PPMS in 2009, although looking back, probably was exhibiting symptoms for a few years prior to this; losing my balance and breaking my leg some years before. I have recently had my serum Vit. D and calcium levels checked, and the results are very low - despite me taking daily supplements - a bit scary really. I am a vegetarian, (not vegan) take yoghurt and cheese, but not milk. (will start this again though)
What I would like to ask sounds a bit silly really, but I wonder if it is related, and whether anyone else has experienced this? Does anyone have problems with their teeth? Since diagnosis, a few of my teeth, although intact, have loosened and feel vulnerable. At first I thought that the repeated MRI’s (I take part in research scans) were affecting the few metal fillings I have, but some unfilled teeth are also loose. I have commenced prescribed, stronger dose calcium medication, but I don’t know whether it will reverse what has happened.
Hi Rozanna, I also have PPMS, dx in 08 but symptoms for several years before (I’m 59)
There has been evidence of MS affecting gums and teeth so could be the MS causing the trouble.
As you may know, many people with MS now take high dose Vitamin D (much higher than the NHS will prescribe as the NHS acceptable levels are now considered way out of date)… many on here inc me are taking 5,000 iu (international units) daily. Very cheap on Amazon.
I haven’t heard of calcium being linked to MS but of course a lot of women post monopause are short of calcium. I’m not sure if the calcium can reverse the damage to teeth… if that problem is caused by lack of calcium. It’s always worth having a google to see if the amount prescribed by GP is high enough (again the NHS might be prescribing by old data). Also I seem to remember something about the body not being able to process calcium without zinc supplement…
Sorry once you start on these supplements it can snowball out of control!
Hi Pat (are you the renowned Pat B. I wonder? ), and thanks for your reply.
My G.P. has prescribed Colecalciferole 20,000 units, once weekly for 8 weeks, then recommends 800 units daily thereafter. I may double this, but will ask for another blood test before doing so; too high a level is as detrimental as too little.
I know what you mean about all these meds - keeps us going though!
I began to suffer all sorts of problems with my teeth, from being loose to painful nerve problems and TN. I also felt very cold and would often go down with all the germs going in the vacinity. Also my skin and hair were very dry, often cracking on my hands and hair lifeless. I felt weak, like I would snap and very dry (odd I know but I did feel odd). I had my vit.d levels checked and calcium when I lifted a mattress and my back went down like a lift. It was then discovered I also had very low vit.d3 levels and calcium too.
I started taking the supplements, but found calcium affected my stomach, so supplemented it with skimmed milk, drinking a pint per day. Ive now got my levels back up to above normal levels, my skin is now smooth & soft and hair shines. I dont often feel as cold, although still cold on most days, but not as much and I dont seem to catch things like I used to do.
I would advise also getting in a supply of evening primrose oil as I previously took cod liver oil which did nothing for me. Now Im sure together with supplement of vit.d3 and calcium via milk it helped condition my whole system back to where it should have been in the first place. Im very surprised all msers dont have their serum levels checked as soon as diagnosis because its very common for msers to have low serum levels - connection?
My skin too is very dry, as is my hair, I’m always cold, and just have to be out in public to pick up anything that’s going - it takes comments from others to link everything together - thank you.
We just plod along, feeling awful, and thinking that it is all down to MS, when it’s because we need something to boost some level or another. I take linseed oil capsules (as am a veggie), but will start drinking milk again, and see how things go.
One more thing Rozanna, I’ve started drinking ‘whole milk’ (full fat) again after reading that your body can’t process the calcium without the fat… so skimmed and semi skimmed aren’t good for calcium intake.
It’s controversial but worth a google and see what you think.
lf you google vitamin d3 deficiency ms - you will find lots of info. l now take 10.000ius of vitd3 daily - but for over a year l took 20.000ius daily - still my levels are not at the optimum 225nmols. l slipped and fractured my ankle 2years ago - which made me realise that my bone-density was not as it should be. You need lots of vitd3 for your body to convert and absorb calcium. l also take Spirulina - which is a very good natural organic supplement covering most of the B vits -zinc - iron-magnesium-lnositol[helps rebuild myelin]
l am now on the waiting list for a hip-replacement - and l do wonder if l had known about vitd3 deficiency earlier l might have avoided this problem. lt seems us with ms - are very deficient in vitd3 and vitb12.
There is very little d3/calcium in milk - in fact Parsley has more calcium then milk. Sunshine is the only way to get enough - or a diet of only oily fish - and you would have to eat lots of it.
Vit d3 is available online - l find Amazon - Healthy Origins vitd3 - 10.000iu 360 softgels the cheapest.
There have been comments on here from people who have been supplementing D3 for a while - and how much better they feel - and how it has protected them from colds and viruses as well as helping with depression and tiredness.
Lets hope we all start feeling better in the New Year.
Following a fall and fracture of my leg approx 3 years prior to diagnosis I started taking calcium and vit.D supplements, but despite all this time on them, my levels are only 26nmols, so once I have had the Colecalciferole for the 8 weeks that the GP has prescribed, I will ask for another blood test to check the levels and take it from there.
Thank you for your advice - you, and everyone else have been really helpful.
CityAssays (Birmingham NHS path lab) offer Vitamin D 25(OH)D tests for £25 (less if you bulk buy and share with friends) so it’s not hard to find out what your current vitamin D level is.
As MS is an INFLAMAMTORY condition so you need to be aware 125nmol/l is the level at which Vitamin D most effectively resolves inflammation.
Chart at link above shows how much more vitamin D required to raise 25(OH)D to 125nmol/l depending on how many Kilograms you weigh.