36 posts Page 3 of 4
Karin, you are fine and your calculations are fine too!

My level is consistently around 280/290 nmol/L and my GP in New Zealand is happy with that. She also prescribes 50,000IU/week. I am making a very good recovery from MS with 17 out of 18 symptoms gone.

I think you are fine too being a 'difficult' patient and you know more about your MS than your neurologists and GPs.

So carry on with what you are doing, and if you need to get your vitamin D tested, do it privately so as not to excite everybody ;-)

PS Do you know about the retreat in Austria in September run by Professor Jelinek?
http://www.overcomingmultiplesclerosis. ... a+Retreat/
Wendy

Diagnosis Dec 1998 OMS Feb 2010 Retreat Feb 2012
Thank you Wendy. I am going to the Austrian retreat. It's only a couple of hours drive from home. I'm really looking forward to it - being amongst like-minded people.

Austria is pretty good at diagnosis and testing and drugs - all happens relatively fast and next to free (high taxes though) but alternative therapies…And as for me buying my Vitamin D supplements from outside the country, online - well, eyes rolled in the GP practice this morning!

I was diagnosed in May last year with CIS. Been on Copaxone and OMS for just over a year. Initial symptom is still around but it's next to nothing, bit of tingling. I did have what I like to call momentary-lead-arm for a few months early on but no sign of that for over a year now. Woohoo.

Thanks again for the quick reply.

Cheers, Karin
Enjoy Karin!!

Read this - goes a long way to explaining neurologists approach/attitude to vitamin D - also mentions CIS and levels up to 380nmol/L.
http://www.overcomingmultiplesclerosis. ... +patients/

If you carry on like this, your Clinically Isolated Syndrome won't progress to a diagnosis of MS. Wouldn't that be great!!
Wendy

Diagnosis Dec 1998 OMS Feb 2010 Retreat Feb 2012
Hi Karin
Your calculations are correct and your vitamin D level is no more dangerous than wearing leather shorts.
Even much higher levels have been found to perfectly safe for people with and without MS: http://www.vitamindandms.org/researcher ... vieth.html
The studies done by Vieth is often cited with regards to the safety of high levels of vitamin D, I think George mentions him in his book if my memory serves me correctly.
If you want to explore further on the subject there are very useful information in the FAQ section. www.vitamindcouncil.org is also a usefull read

Peter
Hi Karin
You have to be in charge of your own health I have come to realise. I remember the first time I had a high result on my D3 test. It was around 310. My doctor nearly had a melt down & tested me for calcium toxicity which resulted in a perfectly normal result. After 3 & 1/2 years relapse free he has relaxed after I told him that there is no way I am going to not take the D 3 that I think I need. He has agreed that in his words, I am my own clinical trial. He said that you look so healthy, I'm not going to mess with that. We had many debates in the beginning though & he realised I was very determined & luckily he was willing to back me but it wasn't easy initially.

Sharon
Thank you everyone. I feel reassured:)

Leather shorts are fairly common in these parts Peter (and considered safe)…

Strangely in my GP's flap about vitamin D pill-popping he didn't get quite as excited about my too low B12 value…I should take a supplement for that, but no advice on how much for how long etc. I will take charge of that myself.

Cheers, Karin
Just as a quick follow-up. Extra tests my GP requested came back saying all in within normal range i.e. no signs indicating renal stones, no metabolic disorders etc. He repeated the only 'problem' was the Vitamin D pill-popping. I said there are other opinions out there and walked out. Not bothered if this bridge is burning.

Thanks again for the support. Now I am focusing on B12 pill-popping and eating more fish;)

Cheers from sunny Austria.
Hi,

Does anyone know the proper amount of IU's of vitamin D3 we are suppose to take daily to maintain good levels? How are we supposed to get high levels of vitamin D if sunlight makes us fatigue?? I try to step outside from time to time just to get some sunlight, but then I get sleepy. I take 1000 IU's a day and a multivitamin. Not sure, doctor does not say much :(

Thanks

Teresa
Teresa

From the site: Aim to keep blood level of vitamin D high, that is between150-225nmol/L (may require up to 10 000IU daily)

Points of note: firstly, you should aim to get your blood tested – I am currently doing mine every three months around about the times of the equinoxes and solstices.

Secondly – it's D3 you want, not D2 which doctors might prescribe if you let them.

Thirdly, the calc to go for is 1000 IU per 10 kg of bodyweight, but if your level is too low you may want to take a megadose to get levels up to within the above range ASAP – alas I have never needed one because I started straight on 10,000 IU and ended up "too high" and am not particularly confident in telling you how much of a megadose you would need to take. I will let someone else do that if it proves necessary after your test results – you need to know your level first, and beware units of measurement which are different in the USA versus UK. The ranges quoted above are in UK measurements. I think they may also be Australian too, but I am not sure. I am in London, UK.

Good luck – all the best – I notice you are new to this community – it is a wonderful community and I have found them to be so very supportive it touches my soul. I would trust any single one of these people in preference to my doctor, certainly my GP, and frankly my neuro too.

Welcome to the road to recovery and healing! Be strong!
.
Farhad
OMS Jul 2014, dx '97-'98, 1st symptoms '91
London, UK
Lerakant,

Thank you for your reply. I will increase my D3 intake since the sun makes me too tired. I am glad to have found this forum, it's easier speaking to someone who knows what we go through day after day, so thanks again. My neurologist just ran some blood test on me when I filled out the forms for aubagio, so I will check with them to see if that was one of the test ran.

Thanks again
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