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interestingly not a relapse but Vitamin D deficiency - thoughts?

After suffering from pain in legs and back as well as fatigue, wobbly legs and buzzing my MS nurse took some bloods last week to test for Vitamin D deficiency as she thought it was this and not a relapse (she says she always looks for other causes to symptoms instead of diagnosing a relapse straight away).

Well, the results came back today and she has asked if can make an appointment with GP for them to prescibe a Vitamin D tablet as my levels are really low and that I should start to feel a bit better by the end of the week.

Does anyone have thoughts or experience of this?

Hello Amanda,

Low Vitamin D level is definitely involved in multiple sclerosis but no one really knows how or why. Once you have got MS it helps with keeping the bones strong.

I as unaware that low levels of vitamin D could cause the problems you mention. The dose recommended by many people is 5000 IU per day, thats what I take.

Are you feeling any better for the Vitamin D?

Patrick.

I haven’t had a diagnosis of MS yet, I had my lumbar puncture today after an abnormal MRI in Feb. I had bloods done by my GP and my neuro as part of the diagnostic process, I was experiencing fatigue, confusion, numbness and dizziness and they found I was both B12 and D deficient and said both of these can contribute to the symptoms I was experiencing. I initially had weekly and now have monthly B12 injections and had to take 40,000 IU of D for 10 days and now I take 20,000 IU a week.

Hi,

I too have not had a diagnosis yet of any kind and I am currently awaiting tests. However I too was found to be deficient in B12, Folic acid and Vitamin D which could be the cause of all my symptoms, the biggest being unable to walk more than 50 yards.

I would therefore presume a lack of any of these could either mimic or cause a relapse so it would be worth ruling these simple vitamin deficiencies out.

As I have been having daily B12 injections for two weeks now does anyone know when I should be starting to feel the difference? as i will be having them every six weeks from tomorrow?

Helen x

I was told with my B12 injections that I should feel the difference within 48 hours. I would definitely have thought after the 2 weeks that your levels would be up to the normal amount even if they were very low to begin with, otherwise I doubt they would then switch you to 6 weekly. I didn’t have daily injections, I had weekly for a month, then having monthly for 6 months, then every 6 months. I’m still on monthly ones, but had my levels checked just before my last injection and they were normal. My neuro thinks it’s been a red herring for me though, because while they have improved I’m still having symptoms. Have you not noticed any difference?

As B12 is not stored by the body - surplus gets flushed out. lt is advisable to keep taking it. lt needs to be Methylcobalamin Sublingual B12. l take it all the time - and this week have started a new type - which is little packs of crystals that you can dissolve in water. lts called lnstant Energy B12 [made by NOW-from amazon] lt contains all the bvits plus folic acid.and Co-enz ymes. Have you googled - ‘Could it be B12 - an Epidemic of Misdiagnosis’ - l was so intrigued l bought the book.

Apart from helping us with MS - B12 also helps prevent the onslaught of dementia/altziemers.

I thought I had been told it takes about 48 hours but wasn’t sure. You are probably right my levels should be back to normal now as I have had over a years supply in two weeks. I have felt better in myself but my symptoms haven’t changed still can’t walk, electric shocks down my legs and arms and that strange fizzing and popping sensation in my legs that seem to be quite common.

Just feel a little disapointed as you must, because this would have been a simple diagnosis and as we still don’t know what is causing our symptoms there are still a lot of scary options out there in this process of elimination.

Has your Neuro told you what the next step is if this is no longer the probable cause?

Helen x

Hi Amanda, It will take more than a couple of days for the vit D to kick in - more like a couple of months I think. Hope they do help how you feel! Teresa xx

Hi, my vitamin d levels were extremely low - I have been on alfacalcidol and calcitriol for about 4 months - repeat blood a couple of weeks ago showed a minor improvement and I honestly don’t feel any better

Sorry, that post sounded too abrupt! Half of my posts seem to disappear at the moment! What I did say was that I hoped you had a better ( and quicker) outcome than me!

I went back to my neuro because my symptoms came back. I did actually think to begin with that the D and B12 had helped because they did go away for 3 months, so I was upset when they came back. It was probably wishful thinking at the time though as I’m 26 and my MRI showed 6 brain lesions, he said he’d expect 1 for every 10 years of my life. I had a lumbar puncture today as the next step in the diagnosis.

Oh, I also meant to say that when they tested my B12 levels the other day they were meant to test my D too but didn’t. So I have to go back for that on Friday.

Thanks Spacejacket, yes I did look it up and was sure that was all that was wrong with me [not saying it still isn’t] as my symptoms all fitted and my B12 levels were 158 which I believe isn’t that low but could cause all the problems. Just wondered how long it would take before I knew if this was the cause of my problems.

It might be a little late for me concerning dementia as I am already completly ‘floopy’ which is why my avatar is upside down

Helen x

I hope your LP wasn’t too painful and you have avoided the headache. How long until you get your results?

Good luck with all your tests

Helen x

I felt the anaesthetic but then nothing. In fact I was shocked when she said she had finished because I literally felt nothing. The doctor said because I’m thin I’ll probably get the headache, but I hope not. I’ve drank quite a lot of coke in the hopes I won’t. The doctor said some results come back today, some take 2 weeks. It’s going to be a pain because I move to London on Sunday, and my consultant is in Manchester. It’s awkward taking time off when you just start a new job! What are the next steps for you now?

[quote=“perditaf”]

Thanks Spacejacket, yes I did look it up and was sure that was all that was wrong with me [not saying it still isn’t] as my symptoms all fitted and my B12 levels were 158 which I believe isn’t that low but could cause all the problems. Just wondered how long it would take before I knew if this was the cause of my problems.

It might be a little late for me concerning dementia as I am already completly ‘floopy’ which is why my avatar is upside down

Helen x

[/quote] Helen, l am taking the equivalent of 2000mcg B12 in the lnstant Energy B12 - and 10.000ius vitD3 - l know my d3 levels are still low even after supplementing for about 5yrs. l think it is a problem with pwms that they need extra as they do not seem to utilise it. My d3 level was 13 - now it is 98nmols - the optimum level is 172/225. Most GP’s work on a much lower level as ‘within limits’. When your avatar is the right way up -we shall know alls well with you.

Hi Patrick, I haven’t started them yet. I have a GP appointment in the morning to get some cos the nursesaid I can’t just nip to tescoi and get a bottle of supplements from there as it has to be a ‘calculated’ dose… here’s hoping they doi help as I feel like sh@t at moment!

Hi Patrick, I haven’t started them yet. I have a GP appointment in the morning to get some cos the nursesaid I can’t just nip to tescoi and get a bottle of supplements from there as it has to be a ‘calculated’ dose… here’s hoping they doi help as I feel like sh@t at moment!

Thank you Lilbill…here’s hoping x

Thank you Theresa…here’s hoping! I kinda hoped they would be a miracle worker…maybe not lol