Forum

Vitamin D anyone/

Hi all,

I had blood tests done yesterday with the hope of been prescribed amantadine for the fatigue but they came back today saying my Vitamin D level is too low and to pick up a prescription from my chemist. (Mine are faxed down there automatically)

Just been there to collect it and the pharmacist said “oo it must be low” when he printed off the script and handed over the pills.

I’m guessing (as the Drs receptionist said nothing) that I can’t have the amantadine till my levels are normal. Do any of you take the Vitamin D supplements and do you feel better as a result?

Thanks

xx

1 Like

Despite taking vitamin d3 for years, I can’t say if it’s made any difference to my PPMS, but it is good for general health, and bone health in particular, so not a bad idea.

How much have you been prescribed?

2 Likes

My Neuro insists that all of his ms patients take vitamin D3. As you probably know it’s a vitamin that isn’t in foodstuffs, you need sunlight to manufacture it. Apparently ms is more common in countries such as the UK where we have short summers and is becoming more prevalent with us all sensibly using Sun block much more. I don’t know if it’s made a difference but his info sounds logical to me and I’ve read enough to know it won’t do any harm, and if it does help it’s a bonus.

Interestingly my daughter had an episode of neurological symptoms and was advised to take vitamin D too in the hope that if she is at risk of developing ms it may keep it away for longer. There’s a lot of research done on the benefits if you look it up on Google.

Take care.

Cath x

2 Likes

Hi Whammel, I have been prescribed 1 x 20,000IU tablet to be taken twice a week for 7 weeks so i guess i will see how it goes.

Min - my MS nurse had suggested Vitamin D Supplements but had told me to wait til I had my blood results before I started taking them - seems its was probably good advice! Hope your daughter is ok now?

xx

2 Likes

That fits in nicely with what is being said on the Barts Blog, so you are clearly in good hands. I hope it leads to some improvement.

2 Likes

thanks Whammel - I was concerned re the dosage originally as google (yes I know!!!) says normal dosage is recommended at 2000IU per day but i guess that is for non MS sufferers so the blog reassures me!

x

2 Likes

Hi Tinkerbell, many of us take 5,000 units a day without a problem so you’ll be fine.

Like Whammel, I haven’t really noticed a difference, but I think I have fewer energy meltdowns than I did before.

Pat xx

2 Likes

Thanks Pat - that’s good enough for me - anything that will help with energy is a win win from me! xx

3 Likes

Yep I take it and don’t notice any benefits but I am not stopping it to see what occurs if you see what I mean. It was originally prescribed for fatigue. Mydoctor said it won’t harm me as body uses what it needs and you pee out any excess.

My sister has MS as well and she used to have monthly injections and said she perked up after the injection.

XXX Don

3 Likes

Gosh I don’t want to give you the idea that it will help with fatigue…I suffer very badly with fatigue.

But I used to have a lot of the type of meltdown which feels like the plug has been pulled out. Actually feels like dying! I don’t get so many of those now and can only think it must be the Vit D.

Pat xx

2 Likes

As everyone else has said, yes I take it, but don’t know if is doing any good, but as it doesn’t harm, am happy to continue.

Pam is

2 Likes

Hi, it was my husband who had MS and he took a high dose of vit d (not prescribed) daily for a number of years as the research says low levels are linked to those getting MS. I am not sure if it made a difference because his PPMS was quite drastic and he died last October. If you need to take it to get your levels up then it won’t do you any harm and may help. So much about MS treatment is not certain as the nature of the disease is so varied and difficult to do high quality scientific research on. Good luck and keep on trying.

4 Likes

Hello Tinkerbellanoodle,

I started taking 5000iu of Vitamin D daily by tablet just over a month ago. I am unsure of the benefits yet as it is early days. Before then I was taking 1000iu per day.

I am about to start taking 2500mcg daily of Vitamin B12 by tablet to see if this helps with fatigue. I see you have been prescribed with Amantadine for fatigue. Have you had your blood tested for Vitamin B12 levels and discussed this with your neurologist? If you have, I would be interested to hear the result.

Take a look at the following link. I understand that an injection is better than a tablet but I have yet to raise the matter with my own MS nurse.

https://www.mstrust.org.uk/a-z/vitamin-b12-cobalin-h-hydroxocobalamin

​Best wishes

Alun

2 Likes
1 Like

Thank you everyone and sorry for the delay in responding - i’ve had a rough couple of days.

Alun - i have not yet been prescribed the Amantadine as the won’t let me have it until my Vit D levels are raised. Nothing has been mentioned re Vit B12 - maybe I should bring this up? How are you finding the Amantadine?

Ronin - do you find the Vit B12 injections help with the fatigue?

xx

1 Like

Thank you for replying and I am sorry you have not been too good lately. I am just getting over a sore throat and cold which exacerbated my MS symptoms.

I am not taking Amantadine as my levels of fatigue are manageable at the moment. However, I am hoping that a good diet and high doses of Vitamin B12 especially, and Vitamin D, will help. I may not feel an obvious benefit but I may be able to measure it by a reduction in deterioration, who knows? I have PPMS.

I think you should bring this up with your MS nurse and see whether a Vitamin B12 injection might help you. Ronin may provide better answers than me.

Best wishes and do let us all know how you progress.

Alun

1 Like

For less fatigue and more energy try Taurine - just google Taurine and MS. l have been on it for a week - and noticed within an hour on the first day how much stronger and more energised l felt.