Forum

Vit D & MS research

Hi all I hope you are all well and enjoying the sunshine! I have had a letter from my lovely MS nurse asking if I am happy to take part in some research about the effects of vit D on MS and was wondering if anyone else had? Sam x

Hi Sam,

No, not so far. I’m not sure I’d want to take part anyway - not because I think vitamin D’s a bad thing. On the contrary, I’m so convinced of the role of deficiency in MS that, if it was a placebo-controlled trial, I’d worry about being in the group that was NOT given vitamin D. I take it, and intend to keep taking it. I wouldn’t participate in anything that could result in me being made to stop.

But of course, I may be quite wrong about the nature of the trial. If they merely wish to compare patients who take vitamin D voluntarily, with those who don’t, and nobody’s being asked to change what they do, I wouldn’t have any problem signing up as someone who does take it.

Tina

Hi Sam, I have recently been to my GP and she has a letter from my neuro saying to drop my vit D from 5000iu to 4000iu per day and says she doesnt believe that high dose vid D is beneficial!!! I have been on this dose for over a year now and doesnt seem to be doing me any harm as i have regular blood tests inc. calcium always come back good.

It would be great if you could keep us posted on this as I am very interested in vit D

Regards,

Alan

I think if you don’t already take vitamin D (I think a lot of people on here do - I do) then it would be really good to be in a placebo controlled trial. The point of these trials is to gain knowledge - at the moment it is pretty clear that having low levels of Vitamin D as a child increases your risk of getting MS later but it is just not clear whether supplementing as an adult makes any difference to the progression of your disease. The only way we can find this out is a proper placebo controlled trial - and this will only be a proper trial if the participants keep to the rules.

my ms specialist neuro is a big fan of vit D.

i’ve been taking it since my dx but today i forgot.

so thanks for the reminder!

carole x

It would be great to have some research into it, but like many other I already take it, it was one of the first recommendations my neurologist made at my diagnoses appointment.

I have been told to take it, brought some then forgot about it as i was told my vit D levels were good. Im seeing my nurse tomorrow so will ask some questions and find out more but think I will take part x

My old MS nurse recommended I take them, but then I read that your body can have too much, and I have never been tested so I stooped taking them. My own GP has never mentioned them and I haven’t got a Neuro consultant. So I would be happy to be part of trial, but am unlikely to be asked as don’t have any contact with anyone. Jackie x

How come you dont have any contact Jackie? Thats not very good at all x

Hi Frothy / Jackie.

I too have virtually no contact with any specialist MS care!
Just out of interest do you live in Wales?

Take Care
Steve.

[quote=“allensp”]

Hi Frothy / Jackie.

I too have virtually no contact with any specialist MS care!
Just out of interest do you live in Wales?

Take Care
Steve.

[/quote] Steve, l did mean to respond to your post re a scooter to get you out and about. l have used scooters for 25yrs- and for the last 10 yrs l have had Trampers - all-terrain beasts - as l like to go off roading, safely with two rottweilers and shepherd dog hitched.

The small shopping type scooters that fold-up/come apart to put in the boot of a car - are not really stable or comfy enough for a ‘Man on a Mission’ to go to the pub. Something a bit more ‘laddish’ is a TGA Supersport - and you can often get one second-hand. There is a good picture of one in the latest ~Pathways magazine - published by MS-UK. lf any of you do not get this mag - do - as it does have lots of good advice/articles etc about latest meds/aids/diets/exercise etc.

The mechanic from Beamer, who produce the Tramper, has just arrived to give it an overhaul/service. He has come all the way from Hampshire - and we live in Worcs. lt is 2yrs since it was done. l have had no problems with it - but he will take it all apart - and grease and tighten all the ‘bits’. There are some good second-hand bargains to be had - especially on Ebay. And most of the batteries and spare parts can be found there as well. Trampers are hard to get second-hand as people do hang on to them for many years. Also, the company offer a good ‘trade-in’ price against a new one. ln fact, the old one l bought - and used for years - then traded in for a new one - they allowed me the price l had paid for it. A ‘win win’ situation.

TGA and Tramper were the two scooters that were featured on Top Gear - where they beat the Top Gear presenters home-made versions.

When the sun is not shining - l take 20.000ius of Vitd3 daily. And have my levels checked via B/ham Assays Lab - a postal service - just a simple blood spot test. 150/225 nmols is the optimum level- l am still trying to get over 98. l also take MSSentials combined vits/,minerals etc. over 40 components recommended for us with MS - in one - tablet. lt also contains magnesium. lf you google it you can read the contents. But l do take extra vitd3 and vitb12 Boost spray.

Also, l take LDN - and use Sativex for muscle spasms. Not on any DMD’s or other meds.

Your, and Frothy/Jackies comment on no specialist MS Care - has also been my experience. 32yrs of SPMS - never had a MS Nurse - and only seen a neuro 4 times. ln fact l went 26yrs without seeing one - and then the first thing this consultant said was that she did not know much about MS. So l replied ‘‘what would your like to know - ask me’’.

Hi there I am undiagnosed but have been told my Vit D levels are v.low ( and I have taken over the counter Vit D and Calcium) unfortunately G.P said combined tablets are not always effective. So I am to start on some Vit D tablets with the correct dosage in addition I am low in folate which I was last blood test that I had also. I have bad cramps and spasms which I take Ropinirole for but low Vit D can contribute to cramps according to G.P As I say 'am undiagnosed so my post really doesn’t have much relevance :slight_smile:

lts recommended that you take vitamin d3 and magnesium - together - research has shown that they work hand in hand and help the body absorb calcium. Google vitamind3/magnesium MS.

Manoon - your posts are very relevant - even without a confirmed diagnosis. Vitamin d3 deficiency is not just for people with MS - it is attributed to 17 types of cancer/fybromyaligia/IBS/Crohns/Coeliac/Osteo Arthritis/Rheumatoid Arthritis /High Blood Pressure and lower back pain - even depression - especially SAD.

Like many on this board - l get my Vitd3 from amazon. A years supply of Healthy Origins softgels 10.000ius 360 caps is about £15.

Magnesium is the one to help with cramps. l hope you will soon feel the benefit of taking these supplements. The reason l get my levels tested by B/ham Assays Lab - is they do a more comprehensive test - and its only a bloodspot - they email your results. When l had a blood test done at the GP’s - l asked for the results and was just fobbed off with ‘‘lts within the recommended levels’’ - yes levels that were considered ok 50yrs ago. Watch out they don’t also add VitaminD2 levels onto the D3.

Hi Steve and others. No I don’t live in Wales, but in Lincolnshire. I did have an MS Nurse who I saw every 12 months in Dec. In Dec 12, appointment was cancelled untilJan, then Feb etc. I saw my Doctor in May 13 and as I felt I was getting worse and worse even though i was dx benign, asked to see a consultant. He said basically it wasn’t worth seeing a consultant as there was nothing they could do. So I saw another nurse - clinical nurse specialist - she helped me complete PIP form and I was awarded this inMarch 2014. I eventually saw my MS nurse in June 2013 but she said I couldn’t see her and this other nurse as well. I haven’t seen either of them since. I have seen a Rehabilitation consultant and he agreed i should see a Neuro consultant, and wrote to my doctor. He still says it will do no good and has given me a blood test as he thinks I might be anaemic because I am tired all the time!!! So I have not seen a consultant since 2007 and I am now very bad at walking, dragging my left foot around after aboout 10 yds. use a stick all the time, have a mobility scooter, balance is haywire, cannot stand and talk at the same time. Now also unable to move after eating a large meal, until my body rests for a while. So I now just have to get on with it. Do my best to carry on as well as I can. I am taking no meication, but perhaps I should try Vit D. I have bought ViitB12 Boost after reading about it on one of these threads. I feel that I should have a go at things and not just give up. - So here I am carrying on. I am going to a funeral tomorrow for a friend who was younger than myself - so this has left me reeling. Just enjoy your life the best way you can - is my philosophy. stay well everyone. Jackie x.

Hi Jackie - I’m not stalking you (really) but I don’t know if you saw my other post. Would you think of trying to get an appointment with a neurologist? Or take the article in MS Matters about Simvastatin and SPMS into your GP and ask if you could go on that? GPs prescribe statins all the time, so yours may be happy to do this. There are things that can be done for people with SPMS - new ways of using old, safe drugs, but only the neuros who keep up with the latest research would know about this.