8 posts Page 1 of 1
Well, this is a strange one...
So after a series of extremely stressful events over a period of a year, I had a relapse 3 weeks ago ( optic neuritis in both eyes, oh the joy of it all!).
During those stressful times, I was not that good at taking my vit D or following the OMS. Very, VERY bad of me indeed as I am sure this is why I suffered the consequences. That will teach me!
So a week after the relapse happened, I decided to have my D3 levels tested. I had to go the private route as absolutely no one here, be it doctors in my surgery or neurologists, wants to know about the vit D link and MS.
Thankfully, Birmingham hospital now sells vit D test kits for only £ 28!!!!!!
So, during that week, I took 15.000 iu of D3 per day and then got tested.
The results arrived and wow is all I can say.
I was expecting my levels to be rather low or maybe just around 50 as we had a week of lovely sunshine here in the Midlands and I took full advantage of it.
But to my surprise, my levels are ...210 !!!!!
How can that be??
First of all, I am thinking that this might be why I am recovering so quickly from the optic neuritis. It is rather incredible! A week ago, I posted on this board and my post was full of typos because of the O.N. Now, if you see any typos, it is not because I am blinded by the light of my monitor ( I was very photophobic last week ).
Second, well... I am not sure what D3 dosage I should now take daily. I am reluctant to take 5000 a day at the moment. But maybe I should?
Anyone has a suggestion?
Thanks for your help!
Hi Inflames,
I would say first of all to proceed with caution, I have used the Birmingham testing method a few times and I have taken part in a study they ran. This included concurrent tests with results showing up to 60 units difference. I am assuming that the test you did was 'dry' blood spots as opposed to sending them wet blood in a vial? The results of their testing method - once your Vitamin D level is relatively high - read with an inaccuracy of up to 30%, with the level reading higher than it should. They have no idea why it happens. It would be sensible, therefore, to deduct a good percentage from your level.
Secondly, you are entitled to an annual test on the NHS. It is my opinion (FWIW) that any medical practitioner who doesn't let an MSer have a test is a complete eejit!! It would be well worth having another go at your GP, then you can compare the results. The blood test result from your GP will probably be lower.
More than happy to chat to you over the phone about this if you want to PM me.
Cxx
I've been taking my D3 drops only for 4 months now, so I'm still not worried about high doses in my blood. In fact, I did some testing with electrodes 2 weeks ago and it said my levels were rather low, so I guess there's no worry there (yet).

On the other hand, my friend told me she also has high doses of D3 in blood (I believe her values were way above 200 nmol/L), so I started researching it across the internet.

I came across this D3 recommendations. It basically says one should check D3 levels every 6 months in order to assure that D3 does not cross recommended 150 - 200 mmol/L value. It even says one should stop taking supplements for 6 months, when values reach the mentioned number. It also gradually decreases the intake by months. This sounds reasonable, if you ask me.

I need to emphasize, though, that adhering to recommended 4000 I.U. per day should bring one to the desired level (and level recommended by George). I don't think it's that easy for us with MS to reach high levels that fast... But if it does happen, taking of supplements should be reconsidered.

I'm bringing this decision on my own, but I think I won't check my levels before at least 1 year passes by...
.
*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*
Diagnosis and treatment 5/5/2014 - 15/5/2014
OMS started 15/5/2014
Be cautious about that article georgeezg, it has no name, date or scientific references. The advice to stop supplementing for six months is wrong - your level will drop very quickly and put you at risk of relapse.

Much better advice here on how to achieve and maintain the right level.
http://www.overcomingmultiplesclerosis. ... y-Members/
http://www.overcomingmultiplesclerosis. ... Vitamin-D/
Wendy

Diagnosis Dec 1998 OMS Feb 2010 Retreat Feb 2012
Hi all!

I had my first episode of MS symptoms beginning in end of October 2014 and finally got iv steroids in end of November (the delay is a whole different story :evil: ). I started on OMS diet and increased my D-vitamin substitution from beginning of December 2014 systematically from about 30ug to 100ug. I live in Finland, which means we don't get any effective sunshine (especially since I work and am never outside during the time when the sun might actually shine) during these winter months, but many products like milk are vitamin D-supplemented and I have used slightly increased vitamin D supplementation already previously.

Now I had my control with the neurologist last week and the MRI scans showed the main lesion to have begun scarring (nasty word isn't it?) and the few (3-4 pc) other small lesions were unchanged from November (3 months). So the MS-diagnosis cannot be confirmed formally, which doesn't bother me at all, whatever works, I'm quite sure the diagnosis will be confirmed at some stage and if not, even better. So I'm continuing with the OMS diet and program even though the MRI did not show new lesions. My first episode was very tough and I like my neurons very much to take good care of them ;)

My neurologist was a bit taken aback about the "high" vitamin D substitution (100ug) that I told her I am taking. I am also a MD myself and to me the 100ug level is not that "high". But much to my pleasure she agreed to have my vitamin D-levels checked, which is good, we are fortunately moving towards the sunnier spring season and it has already been nice and sunny for a couple of days (-3C is warm for this time of year, so no sun-bathing yet though).

My question is: the laboratory referral suggests that I should refrain from taking vitamin D supplementation for "a few days" prior to going to the blood-test, but it does not specify what is "a few days"? I know the levels reduce quite rapidly, so please tell me, what is the time from taking the regular dose of vitamin D prior to the blood test which would make the level reliable and to reflect the actual level I am accomplishing while taking my current dose?

Thank you already in advance!


Annette
Lunanette, 1 ug = 40 IU so you are taking 4000 IU - not enough as we should be taking at least 5000 IU a day with blood tests to confirm when you've got the dosage right.

Don't stop supplements in preparation for the test - we use at least 5000 IU a day and your level will drop very quickly if you stop supplementing and you will get a false reading.

Show your neurologist this editorial from the Multiple Sclerosis Journal (a major international publication) - neurologists would take 10,000IU themselves but not prescribe it for their patients.
http://www.overcomingmultiplesclerosis. ... +patients/
Wendy

Diagnosis Dec 1998 OMS Feb 2010 Retreat Feb 2012
Thanks! This is also what I've understood from the papers as well. Usually there is some limit for not getting artificially high levels by taking the D-vitamin in the morning immediately before the test, so I thought I will follow the protocol for common pharmaceutical testing i.e. not taking the vitamin on the same morning, but instead after the bloodtest.Then the level would not be influenced by the daily dose.

I know the recommended dosagw is 5000IU and am very happy that the neurologist agreed to testing the level so I can increase the dosage if still low. Especially since I do not consume any milk with the OMS and do not get as much substitution from other sources. Since we have very little sunshine during the winter months D vitamin substitution has been recommendated for everybody and commonly even some bottled water is substituted with vitamin D. (The tap water is very good quality so I rarely drink any bottled water, maybe once a month in some meeting).

In Finland there is a lot of debate of vitamin D as a panacea for almost anything (less focus on actually significant associations like MS) and we have had a small number of overdoses among young fitness individuals. Some of them might be related to timing of bloodtest, in solitary cases there has been actual hypercalcemia signalling true overdosage, not only fatigue and muscle weakness type unspecific symptoms. Vitamin D substitution is very commonplace as I mentioned although I cannot believe anyone could eat excessive amounts of milk-products resulting in overdose, which clearly needs supplementation. It is also possible that these subjects do have sarcoidosis with intrinsically high vitamin D-levels. Cases are solitary and at least one of them was related to use if vitamin D sprays, which are more avidly absorbed and in case of this young fitness girl I do suspect the dosage might have been excessive? Or the last dose shortly before the bloodtest. The reports are all in Finnish and not very detailed so it's not very hard evidence to anything, but it is probably the reason my neurologist was also a bit reserved.

Also, treating a MD (I work as a specialist in respiratory medicine and incidentally happen to run the clinic responsible regionally for home mechanical ventilation thus treating exceptionally many neurological patients needing ventilatory support) that has her own opinions on treatment (OMS) is difficult, I fully appreciate her concerns. I am keeping all my options open, following the OMS is clearly not harmful to anyone, even without MS. If following the OMS will result in my MS not formally diagnosed (which I unfortunately still doubt), then I am just very happy and very thankful for finding this information readily processed! After falling ill with double vision etc I went through a very similar process to George, turning to the medical literature given my profession and research training. I have kept on reading and attest to the findings of George and others on the limitations of the research based findings on lifestyle factors in real-life medicine, which is something very familiar to me from my own work. In asthma and COPD only 5-10% of real patients from our populations are represented in the pharmaceutical trials yet results are extrapolated and marketed to 100%...

Thanks for the rapid reply!
Hi I am reading T Cambell's book Whole which is the same coauthor as the China Study.

Need to read the china study first but it talks a lot about the limitations of current paradigms in research. Very interesting and am looking forward the rest of the book.
Dx 1992 OMS 25-2-09
8 posts Page 1 of 1

Who is online

Users browsing this forum: No registered users and 3 guests