Had my first appointment with MS nurse last week, aside from general and DMT stuff talked about D3. She told me that NICE guidelines only 1000Ui per day but thought you could/should take more ? What are the real risk factors from taking say 5000Ui? no idea what my existing levels are but I can say I certainly for the most part do not overdose on sun.
Also did not recommend any other supplements and said B12 link was low. Confused as have seen many comments on this forum and others indicating otherwise
at my last Nuro appointment it was recommended that I increased my vit D from 1,-2000ius to5,000ius as it believed to help with fatigue (not that I’ve noticed)and can prevent relapses, whether or not that is true I cannot really say as I’ve had Ms for four years now, but I have had one relapse other than the first when I was diagnosed.
Im also not sure about the vit B12 as its never been mentioned, but maybe that’s because I’m in the normal range,however I am anaemic so am on iron supplements I each day.
I have recently been diagnosed with pernicious amenia (my OH has it as well - how sweet we now have something in common ) which means that I have just finished a massive set of “loading” doses of B12 and will have to have top up injections every 10-12 weeks from now on.
My PA is NOT related to my MS but B12 levels are something that people with MS should keep under review because abnormally low B12 levels can cause symptoms that are similar to MS ones and could be mistaken for a relapse - eg excessive fatigue and cognition issues to name but 2.
Interestingly, B12 levels do not seem to feature in a normal full blood test and I only had my levels checked after nagging my neuro at my last appointment. She ordered it to shut me up but the next thing I knew , as soon as the results came back, I was getting frantic calls from my neuro’s secretary telling me to get to my GP straight away and emergency calls were made to my GP too because my B12 levels turned out to be dangerously low!
My neurologist strongly recommended i take D3; i am on 4000IU daily. two in the morning and two at night.
the vitamin is cheap and without side effects / consequence… and so i figured, “why the hell not?”
i have heard of individuals who ‘megadose’ in excess of 10000IU daily; although this is not sustained for a lengthy period.
in addition to this, i sunbathe my mushrooms before eating them.
B12 i also take. one sub-lingual dissolver of 2500mcg (perhaps?). it is supposed to help with nerve growth / repair. seeing as MS is a demyelination of neurons… i once again figured, “why the hell not?”