I take the same brand of vitamin D3 and it made my levels too high so I doubt very much it’s the pills. They seem to work fine for Alison and myself at least.
Kx
Thanks Karen - Someone has phoned me tonight to say that he had read that some people with ms have a faulty gene that stops them from absorbing vitd3. l spotted that my previous reply l said my first test showed that my levels were 23nmols - but thats a mistake - they were that after taking 20.000ius for about 18months.
Shall start taking them with food and see if that makes a difference.
F
Your neurologist is either a fool or a liar or perhaps both. Lets be honest here no over the counter Vitamin D3 CHOLECALCIFEROL will cause as many problems as the Ergocalciferol that some health professionals still insist on prescribing even though they know
Bjelakovic G, Gluud LL, Nikolova D, Whitfield K, Wetterslev J, Simonetti RG, Bjelakovic M, Gluud C. Cochrane Database Syst Rev. 2011 Jul 6;(7):CD007470. there was a 6% relative risk reduction when supplementing with vitamin D3, as opposed to a 2% relative risk increase when supplementing with vitamin D2
I’ve never in all my time posting on the internet heard anything quite so idiotic and I’m surprised you didn’t challenge such ridiculous, posturing, nonsense.
I expect he’s upset because anyone with any sense knows they can get their 25(OH)D tested without going to their doctor and get a years supply of PERFECTLY EFFECTIVE 5000iu vitamin D3 from Amazon for less than £9.
Sure there is now a relatively cheap prescription Vitamin D3 DEKRISTOL but really when you know the average prescription cost to the NHS for Vitamin D prescriptions is £20 you can see how the pharmaceutical companies are ripping off the NHS and I prefer not to be party to that kind of fraudulent practice.
Your ethically challenged neurologist by spinning downright lies is part of the problem.
We can all see from the charts at Grassrootshealth what the typical range of responses to OVER THE COUNTER VITAMIN D3 is and it no different to prescription Vitamin D3
and a lot better than when Doctors were prescribing the less effective ERGOCALCIFEROL http://jcem.endojournals.org/content/96/3/E447.long
For the last 60 years health professionals have been dragging their feet over the Vitamin D MS connection and now they know they have been caught out and the tide is turning against their prevarication and determination to continue disease mongering for as long as possible they try to put people off taking responsibility for their own health and escaping from the clutches of the drug pushers.
Shame on them. That is a disgraceful slander and the vast majority of people taking effective strength Vitamin D3 will get reasonable response in their 25(OH)D levels. It really is about time MS patients stood their ground and refused to tolerate this outright dishonest nonsense.
er, yes Ted, but just because a neuro says things like that, doesn’t mean that we, the patients have to do - or agree with what he says. That’s why we have this forum to help and support us and share knowledge.
Neuros know nothing about diet or LDN or supplements and why should they? They are clinicians and deal with science based medicine, which can have its limitations. I’d never discuss my diet with my neuro, unless he asks and wouldn’t expect him to know why I follow the diet - except to say that for me, it works.
My old neuro in York used to rubbish lots of things and even got confused between Amitriptyline and Modafinal, but the MS nurse was brilliant. It’s not worth getting all worked up about, as in general, we find out more from here than in a ten minute consultation with a neuro each year.
K
K, l agree with you - l have never -until yesterday - in 30yrs -met a neuro who knew anything about ms. ln fact the top consultant at a rehab hospital told me that there was no test to check vitd3 levels and that a normal diet with plenty of milk would be enough to get vitd. l refused to go to him again and as l live on boundary of two counties l hopped over and now go to the other. Yesterday, l did have my annual appointment - and it is always a different neurologist. This one was great- he knew all about LDN - was all for it and was surprised that l still had to pay for it privately and said he would put it in his letter to my GP. Silly me did not mention vitd - after the last time - now l wish l had as l think he would have been better informed. He was shocked that l had never had a MS Nurse, and that l did not have any neurophysio help. So l am waiting and hoping that things might change. He tested the movement in my legs and as l have no movement in my left leg and severe arthritis in hip/knee/ankle in the right leg - he could not understand how l managed to walk [with a rollator]. l asked him about getting a WalkAide Fes - and he said he would refer me to the orthotist - but of course it all comes down to funding. But he did agree that it is necessary for me to have a better supporting leg as l am ‘booked’ for a hip op - or ‘hip hop’ as l have decided to call it.
We discussed the merits of LDN and he agreed that all the patients he sees who are taking it do have a more positive attitude to their condition making their lives easier. For me, it was like someone switching on the lights - at last!
Fx
Hi Frances,
I read your post about your neuro appointment and cheered. People with SPMS (and PPMS) aren’t given the help they need and are discharged to be cared for by GPs and overworked MS nurses and it’s outrageous.
I read the Barts blog each day and the Mousedocs and Professor Giovannoni do have an interest in MS progression and reduction of disease activity but this doesn’t seem to make its way down to a local level. They show MRIs of progressive patients - but how many of us ever have more than one MRI scan?
The message from the Barts blog seems to be that we need more scans to properly predict what may happen to us. US - the people with MS who would like to know what’s going on in our brains!
The Tysabri screening seems to be providing a lot of information about MS lesion activity.
I’m so pleased that your new neuro is pro-LDN and is offering some neuro-physio help. FinalIy! I think the endorphins and D3 levels are really important as well.
best wishes,
K
xxx
Ted- my neurologist gives me 6 months supply of vitamin d3 10,000iu for one prescription charge. So actually that IS cheaper for me than buying from amazon so he’s not ripping me off at all! If one years supply of 5,000iu vitamin d3 is £9 then doubling that to get up to the 10,000iu dose daily would be £18 - two prescription charges gives me a years supply for £15.30. So my neurologist is saving me money and giving me a prescription controlled vitamin d that is regulated and i also get regular blood tests to check my levels