I'm new here, just found out about the forum on Google and was amazed with the amount of information you post here! I'm 29 and I'm from Brazil but live in Ireland. At the moment I'm getting into a diagnosis of MS, although I personally have no doubt that it's my "issue" from my history of symptoms etc.
Anyway getting into the point, end of last year I went to a doctor here in Ireland to check my eyes and he couldn't find anything wrong on the tests, so he suspected it could be optical neuritis and requested me a test. The test result confirmed the neuritis and after googling it I found out that most likely it would be related to MS. After reading about MS I was sure that I was suffering from it as I had a couple of other episodes that are also common symptoms of MS. I went back home (Brazil) for Christmas and decided to visit a neurologist there as I personally don't like the health system in Ireland. Between the time I got the confirmation about neuritis and my flight to Brazil I found out about a doctor and researcher that is applying a treatment with high doses of Vitamin D on his patients with excellent results... so I read a lot about this, watched videos and the results were really amazing.. no side effects and the most amazing thing is no further MS symptoms further down the treatment road. I was very lucky and managed to get an appointment with a doctor from his team and after almost 3 hours consultation the doctor was pretty sure that I have MS, however he couldn't confirm without the MRI scans. He also asked for blood and urine tests which I managed to do in Brazil.
Due to the short time in Brazil I had to have the MRIs done here in Ireland, luckly everything worked fine with that and I recently got the result... however it's hard enough to get an appointment with a neurologist over here, even for private (which costs 270 euro). Therefore I would like to hear your opinion as more experienced people... please find the result below:
" MRI brain: On the axial FLAIR sequences several linear periventricular deep white matter high signal lesions are identified consistent with focal demyelinating plaques. None of these demyelinating plaques show significant enhancement postgadolinium. The gray matter is normal. No focal infarction or space occupying lesion identified. The posterior fossa structures are well preserved.
MRI cervical spine: On the sagittal T2-weighted sequences there is a high signal lesion in the superior cervical spinal cord at the level of the odontoid peg. A further high signal lesion is also seen posterior to the intervertebral disc space of T2 and T3. These lesions are consistent with focal areas of spinal cord demyelination. The lesions do not show enhancements postgadolinium. No evidence of cervical spinal stenosis identified. " I really appreciate if someone could provide me with your opinion about my results. For the ones interested to know about the treatment with high doses of Vitamin D I recommend to google for "Dr. Cicero Galli Coimbra", you'll find loads of information. There's also a facebook groud of his patients following his treatment and they share their results, etc...
I am in Dublin too, but I came to my neurology treatment through the casualty department, so I've never had to wait for an appointment. This is just something to keep in mind in case an objectively observable, acute episode happens to you. You show up in casualty with one, you get seen.
With your MRI results and the episode of optic neuritis, you definitely need to be seen by a neurologist as this may indeed be consistent with Clinically Isolated Syndrome (a concrete stop on the road to MS diagnosis). You may be able to get to a neurologist in 2-3 months in Dublin a guess).
I will say (and I'm not Irish either, so I don't have to be patriotic!) that my treatment here has been excellent. Don't forget that if you do have MS, your disease modifying treatments will not cost you a single cent under the Long Term Illness Scheme - a bonus most people around the world could only dream of. http://www.citizensinformation.ie/en/health/health_related_benefits_and_entitlements/long_term_illness_scheme.html
I'm currently in a few academic studies regarding Vitamin D (I just had to give them blood though), so it's definitely a theory that's getting looked at. But the jury is still out.
I've started the treatment with 60,000 IU/day + other vitamins and omega 3.
The dose is calculated based on your symptoms and your wight/height... but for that the appointment with a doctor from Dr Cicero Coimbra is needed (or with himself, of course).
I'm now about to complete 3 months of treatment and after 3 months is when we need to repeat blood and urine tests and talk to the doctor again, so based on the results he'll make adjustments for your dose. After that you just need to see the doctor on completion of 1 year of treatment. On this appointment you need to bring again blood and urine tests plus MRI scans to check the progress of your treatment.
I'm really positive about this treatment because I know how good Dr Cicero is... he's a professor and researcher of the best medice school in Brazil, has masters, phd and post-doctoral degrees... if I'm not mistaken now his postdoc was completed in Sweden and he also studied in the USA for a while.
In the facebook group we can see a list of testimonials from his patients and with all of them it worked. People with more than 10 years of treatment that just "don't have MS" anymore. Of course it's not the cure and the treatment is for life, however a life without further attacks and progression of the decease if started to treat in an initial stage.
You can watch a video made by a patient of him that's a journalist and decided to spread the word about the treatment. The video can be found here http://www.youtube.com/watch?v=erAgu1XcY-U
you can activate English subtitles there.
Some information in English can be found also here: http://mscure.aussieblogs.com.au/
Anyway after my 3 hours consultation with Dr Sergio (from Dr Cicero's team) he was pretty sure that I had MS too and suggested me to start the treatment with Vitamin D while I had my MRIs to close the diagnosis... and I feel much better already, after only 2,5 months of treatment...
I do suggest everyone to go read more about this treatment and go for it. There are many people from Europe (France, Norway, Portugal, UK, etc), some from the USA and many of course from Brazil that are following it with success.
Thanks for giving your opinion about my MRI result!
Good to see someone from Dublin here too haha :)
Yes my GP got an appointment for me but it's for next month... I'm still waiting.
I know we can get treatment here out of cost... it's the same in Brazil, but I rather go for the Vitamin D treatment that seems way more effective.
Did you see that UK government completed recently studies that showed that interferons are not effective? It's just a very profitable industry that the pharmaceutical companies don't want to lose their money... causing a lot of side effects to the patients and almost no results.
It's worth watching the video I posted up there, reading a bit more about it and think about it...
You've got two parts to your post that i can see, 1 being your MRI results and possibility of MS and 2 the Vit D treatment for MS. Keep in mind that we are not dr's, everything said is an unqualified lay persons personal opinion, based on experience and the information provided.
From my understanding of MS and the Mcdonald Criteria, your results do indicate MS is a more likely dx, because of a few things that point more strongly towards the MS direction. Evidence of Optic Nuritis (ON) and 'brain' lesions gives a person a higher rate of probability or converting to MS within a 5 yr time span.
Your brain lesions are don't show significant enhancement so there maybe some enhancing still happening(?), if they are it typically means they are still active and there is still demyelination happening. If they are still active or enhancing, the lesions were caught on MRI in the right time frame.
According to the Mcdonald Criteria, for Clinically Defined Multiple Sclerosis (CDMS) a person needs to have 1 or more lesions, in at least 2 of 4 specific areas of the Central Nervous System (CNS). These specific areas are the Periventricular, Juxacortical, Infratentorial, and Spinal Cord, your MRI results have indicated you have lesions in both the Periventricular and spinal cord areas.
One MRI can show the time and space aspect of the Criteria, if the MRI shows a person has both enhancing and non-enhancing lesions because that indicates both old and new lesions, so more than one attack. The criteria says " 2 attacks; objective clinical evidence of 2 or more lesions OR objective clinical evidence of 1 lesion with reasonable historical evidence of a prior attack"
So from my understanding, unfortunately you do seem to have the "objective clinical evidence" of at least 2 attacks, (periventricular brain lesions + spinal lesions) that they are looking out for. Possibly more if Optic Nuritis (ON) and if not all of your brain lesions enhanced, then those could also be counted as objective clinical evidence of other attacks.
MS in my humble opinion, unfortunately MS would be at the top of your list of possible's, so getting in to see a neurologist in the country your residing, (preferably one that specialises in MS) is most important. Its also possible, now that you've had the MRI's, the Brazilian neuro if you send him copies, may be willing to confirm his suspicion of MS now, might be worth finding out.
Sorry i thought i'd given you a link for the Mcdonald Criteria, here is the one I have in my files......
Part 2: the Vit D treatment for MS
Beware of any treatments that indicate or imply there is a 'cure' for MS!
There is a big, big difference between scientific/research based evidence and anecdotal based evidence. If you google MS cure you will find there have been many 'cures' and none of them have been able to be scientifically proven, so its very important to keep an open mind and not buy into theories that profess incredible stats.
I'm an Ozzie so was quite interested and looked into this site http://mscure.aussieblogs.com.au/ BUT the first line already had my red flag flapping, its just too good to be true and generally when 100% is being claimed for anything, it means the claim is impossible.
It states "MS Cure
Vitamin D has already cleared 100% of lesions from over 1,000 MS patients in Brazil"
Its goes on to say......"It is confirmed that Vitamin D Effectively Clears all lesions and erases many of the sequels from autoimmune disorders such as MS, Lupus, Vitiligo, Fibromyalgia,Alzheimer, Autism, Chron’s, Guillain-Barre, Hashimoto, Parkinson, Arthritis, Psoriasis, and many others. Currently many patients have a normal level of quality of life after treating with D3 vitamin."
I can't believe Vit D is the cure for ALL these different conditions, and I hope you seriously consider looking into all the research before you believe claims like these, which from my perspective are not credible.
Vit D is important to everyone, not only MS pts. My doctor automatically checks me for it and I've been on supplements for it for years and my levels are fine.
JJ is right, a vitamin CANNOT erase an autoimmune disease that affects nerve coatings. It is NOT capable of clearing lesions. Lesions can, however, disappear on their own, becoming invisible, but they are still there.
Think about it, if Vit E could do these things, the National MS society would be screaming it from the rooftops!
Just my opinion, and going back under my rock for a nap!
Many many thanks for you very detailed response!
I had the MRI scans when I was in the middle of my last attack (that started after I found out about the optical neuritis and got really depressed with the MS possibility).
I think it was a good moment to have the MRIs as the lesions were still active!
Just commenting about your second comment.
You are write, I didn't read carefully the link that was on the video, but the word "cure" used there is misleading.
Dr Cicero himself never uses this word... he clearly states that it's not the cure and the patient need to follow the treatment for life in order to keep MS under control.
Again the part that says it cleared 100% of lesions is not correct.
This can be explained by the first bit of the video I posted, where you can hear Dr Cicero explaining how the MRI scans CAN look like after a while on the treatment... but it's not guaranteed as depends of many facts.
I keep in touch with many of his patients on the facebook group as I said before and I know that for many of them the lesions did disappeared and the recovered skills that they had lost already. For example, people that were in the weelchair and are not anymore, people that were blind from 1 eye and can now see again, etc..
These people post their MRI Scans and pictures of themselves to show their results as they are very excited with that.
But as mentioned, it depends on many things in order to get different level of results with the treatment and a main one would be stage of the decease. A patient that has MS for 20 years is less likely that will recover as well as a patient recently diagnosed and younger.
And again, Vitamin D doesn't cure the autoimmune deceases... but from using it according to Dr Cicero's protocol it will stop the progress of it as it regulates your immune system avoiding it to attack your own body. There are many publications around that and you can found it easily on internet too.
Again there are many studies that show the myelyn being reconstructed.. our body can indeed to reconstruct the myelyn previously attacked by MS. This is not achieve only by using Vitamin D but also different vitamins, minerals and omega 3 (DHA) in the right doses as stated before too...
You are free to believe on whatever you want, obviously! So am I!
Have you seens someone avoiding weelchair by using interferons? I have never... and I did see it happening with patients following Dr Cicero's protocol with high doses of vitamin D.
"Think about it, if Vit E could do these things, the National MS society would be screaming it from the rooftops! "
Believe me, the interferons generate billion dollars profit for this industry every year. Most of the researches around MS are sponsored by these labs... they just don't want to lose their money.
Again, it requires a 20+ years research with a wide (thousands) audience in order to be announced globally... what is not fair as Vitamin D is not a medicine.. if you prefer to wait and see that's your call!
I rather start it now as I can see the results happening by talking to the patients...
The Vitamin D levels are discussed differently, countries say that a different value is considered right, t's not properly defined yet... so your doctor saying your level of vitamin D is OK is not enough to think you don't need it.
And again, the treatment is not about getting your level of vitamin D to the standar level, but having it higher... that's the point where the studies identified that your boddy starts to react to the decease.
Hopkins' MS center believes MS patients should maintain higher D levels than generally acceptable (which is 20 and above), and would like to see readings in the 50s, or so my NP recently said. I asked why, once someone already has MS, and she said that D has anit-imflammatory properties and is believed to benefit the immune system.
Here is what Science Daily had to say, about a year ago
With that said, though, there is no scientific evidence that bombarding anyone with Vitamin D will achieve great results in treating MS. I would never ever take 60,000 units a day. 2000, plus what's in my multivitamin, plus what's in my morning milk on cereal, is plenty to keep me in the good range for MS.
"I think it was a good moment to have the MRIs as the lesions were still active!"
Just to clarify, you told us the MRI reported there was no "significant enhancement post gadolinium." This indicates the lesions visualized weren't active (or new) because lesions only enhance for about 40 days after they first appear.
Most neuros these days seem to believe in the power of vitamin D to help in MS treatment. For sure, go ahead and try the treatment once you're diagnosed but I'd ask you to consider pursuing more traditional treatments at the same time. They may not be able to boast of results like your doc in Brazil but they are proven therapies as tested by strict guidelines of the US FDA - far from perfect but not useless either.
As for that report out of the UK, I personally find it hard not to question the findings of countries that are responsible for paying the high treatment costs of all their diagnosed citizens. (Ever wonder why people in those same countries find it harder to be diagnosed in the first place?) Just my opinion.
1). Does anyone find the get nauseous if they take too much Vitamin D? I am supposed to take 4000 iu but tried taking 5000 and it made me I'll
2). Twopack, I think your previous comment is completely inaccurate. I've never read a statistic that indicates that countries that provide healthcare are less likely to diagnose MS and from what I've read on this board it doesn't matter where you are from, sometimes people are diagnosed quickly, sometimes not... But to suggest that countries that provide healthcare willingly sit back and overlook a diagnosis such as MS is horrible.
ah heck Mummy, even here its hard to get a Dx sometimes and I've read plenty of posts on here from people in the UK and Australia who say its very hard to get them to actually admit to a pt that they have MS........
I think we are forgetting the basic common sense rule here, Vit E in safe amounts will harm no one and if your neuro says you have enough, they you have enough. I take a maintenance dose because I do stay indoors so much and miss the sunshine which my skin doctor says is not good for me anyway. My own vit D levels are sufficient to satisfy my neuro.
I recently started taking 10,000 iu daily after taking 5,000 for quite a while and my blood levels staying around the middle range - though up from deficient where I was previously. Will be tested again next month to see I'm in optimum range yet. I agree there's something to this.....too many studies seem implicate it in this disease, for various reasons. While they sort that out, I'll continue on Copaxone which has significantly decreased my relapse rate and severity. To answer your question, mummy, no I don't have any side effects from this high dose of D3.
And I guess just to echo mummy's comments to twopack,I also have never heard that it's harder to have MS dx'ed in countries with universal health care. If anything, I'd think it would be easier since all citizens have access to diagnostic procedures, that doctors and not insurers decide which tests to run and which treatments are provided, and no one goes without these tests and MS treatments based on ability to pay. In Canada, as in the US, neuros use the McDonald Criteria to dx, so ease of dx is theoretically the same. Here, all provinces and territories provide access to DMDs not just for RRMS, but CIS and SPMS as well, because the Canada Health Act guarantees access to medically necessary services. It's rather cynical to think there's some kind of conspiracy in place that encourages doctors to break their professional oath, not comply with federal legislation, and deny/delay/fudge the results of tests to stave off diagnosis, and deny treatment, all as an effective method of managing the provincial budget. Would seem a whole lot simpler to ditch the system if that were the case.
Seems to me,entirely anecdotally I will admit, that in a for-profit health system where insurers make greater profits the more tests and treatments they deny, it theoretically would be more challenging to get diagnosed and treated in such a system. But yes, anecdotal and possibly way off base. I think when patients have had a long and difficult road to dx, whether in a profit based system, or otherwise, the reasons are probably far more complex than could be explained by our respective anecdotes and conspiracy theories............
My advice is, your neuro is doesn't know everything. Don't believe 100% that he says is the right thing. Look up for other opinions and options of treatments.
Vitamin D power is not taught on Medicine schools unfortunately. The mult billionaire pharma industry is not interested to have it started anyway...
However there are other options, many studies released around the power of this hormone wrongly called as a Vitamin.
The same thing applies for what is considered a good/right level of vitamin D on your blood tests. The right level varies from country to country and nobody seems to be quite sure about what is right yet.
As I said Dr Cicero's treatment is a result of a research and is being applied for over 10 years.
It's a fact that 10,000 IU/day is not dangerous to anyone to take as this amount of Vitamin D is obtained by staying in the sun for 20-30 min with your arms and legs exposed. This is not a lot. The amount of Vitamin D we get from food is nothing...
10,000 IU/day can be taken by anyone with no harm... above that you need to have a doctor with you and a special diet as diary should be avoided.
This two links are quite good.
The first one is about a women that is using considered high doses of Vitamin D for more than 10 years and you can see her results, although her doses are not high at all...
This second one is about Australia government being the first one to believe and start using Vitamin D on MS prevention and treatment:
There are plenty of articles and studies published on the link I post before (http://www.vitamindandms.org/)
Again, please do not take your neuro's word as the on that is correct and everything else is wrong or doesn't exist. Unfortunately we have loads of outdated doctors working world wide, plus there are the pharma industry interests involved... many of them do get money from the labs to prescribe a specific medicine to their patients.
Anyway I just recommend everyone to read as much as possible and watch videos.. there is another option!
An also, the Vitamin D treatment can indeed be applied together with the traditional interferons one. Most of Dr Cicero's patient start the treatment in parallel with the intereferons until a point where they stop taking the shots and never come back.
For the ones that mentioned about feeling sick after taking Vitamin D, it can be related to the oil itself and not to the Vitamin. Some people have to look into options of dry pills of vitamin D instead of the oil, but usually after a couple of days with the oil your body gets used to it and the problem goes away.
I think I mentioned before, but Dr Cicero's protocol is not only build on Vitamin D, there are other Vitamins used and also Omega 3... all of them have importance on the protocol's effectiveness.
There's a file with testimonials from his patients, all written and published by the patient's themselves and not by the doctor... via facebook.
Not sure if the link will work for you guys that are not on the group, but try that out... there are a couple of testimonials in english (from patients from outside Brazil of course) but most of them are in Portuguese. Anyway it's easy enough to translate them on google translate...
If my D level was low I'd take medical advice to increase my input to 10,000 units. That's a far cry from 60,000.
Testimonials are not medical evidence. Neuros of course don't know everything, but in my view, a neuro at a world-respected MS institution has a great deal more credibility than members of the general public when it comes to treating MS. Why do we never see testimonials from those who try something and find it to be worthless?
I also don't buy the claim that neuros are in a conspiracy with big Pharma to keep cheap and effective remedies off the market. They have different axes to grind, for one thing. For another, that insults the integrity of every research neuro not in agreement. For a third, conspiracy theories give me the creeps. I'd hate to live my life from a paranoid perspective.
There are several extremely well-regarded conferences held world wide each year that address advances in MS research. New studies and findings that result from rigorous scientific inquiry are brought to the fore for the general knowledge of all participants. If your doctor's work meets the criteria for scientific validity, then we should be expecting it to be presented at one of these gatherings in the near future. I'll keep an eye out for this and i'm sure others here will too.
I understand your thoughts.. i had the same initially.
The patients testimonials are just 1 thing, of course there's a lot of research behind the treatment. Like I said, he's a lead researcher in the best medicine university from Brazil.
There are many publications around treating autoimmune deceases with high doses of vitamin D you can find them all like I said.
There are more studies to be published internationally soon about his protocol, keep a watch and you'll see.
Sorry but your statement regarding Australia is not actually correct "This second one is about Australia government being the first one to believe and start using Vitamin D on MS prevention and treatment:"
Australia is NOT using Vit D on MS prevention or as a treatment, this is only a 'trial' !! "The trial will focus on the possibility of using vitamin D supplementation to prevent a diagnosis of MS following a person’s presentation with the first symptoms that may lead to a diagnosis of MS."
"'This is the first trial of its kind in the world, to see whether oral vitamin D supplementation can benefit people who may be in the earliest stages of MS"
Vit D is a theory and just like many of the other theories, it is yet to be proven. Until the research studies have fully tested the theory, from my perspective it is imperative that people keep an open mind and not get all gungho!
Please note: Vit D has a 'possible' link to MS, no credible organisation is saying it is an 'alternative treatment' for people with a confirmed dx of MS, or that once a person has MS Vit D can take away all sx's of MS, which for all intense and purposes imply's Vit D is the cure.
I personally find many of these testimonials alarming, they imply or suggest people with MS should stop taking their DMD and take Vit D instead. Their collective claims are that Vit D will 'reverse' all the damage to the CNS and they are now living without any MS sx's, yet there is zero scientific proof that anything can reverse MS!
It maybe just me, but as soon as conspiracy theorist commentary starts, I find my self shutting down, theories that bring out this type of thing or over the top defence, will always be harder for me to take as seriously as those that don't. I'm sure i'm not the only one, who is more interested in theories that show promising but not sensational results. Vit D may prove to be more important, than what we are currently aware of, but all these claims are not imho doing the theory any good.
Can we take this back and forth discussion to the "sidebar" please?
I am not sure about the majority of forum readers but its getting old,
and before anyone says I don't have to open the thread, I do because
I see replies from people who's knowledge I trust
Hey guys just want to finish up on this thread by saying that please do not take 100% that I said as a rule for the treatment.
I'm not Dr Cicero, I'm not even a doctor... and I don't have an excellent level of written English.
I just wanted to bring this information to people that don't know. If you feel that this could have potential so go ahead and do a research to find more details from a trustable source than myself here.
Again, Dr Cicero NEVER tells any patient to stop the traditional treatment (with interferons) in order to follow his one. It ends up being a natural thing for most of the patients, although there are patients that keep going with both treatments in parallel.
I just wanted to bring information and good news to you guys, if you prefer to argue and not trust that's your call, I have no problems with that!
Even in Brazil most of the neurologist still don't trust it and tell the patients to not to do, this is normal as it's not taught on medicine courses. However they have nothing to say when they meet the patient back again after a while and see by checking MRIs and physical tests that the patient is much better than before... so they end up saying "please continue with this, it's working".
I'll end my participation on this thread (by the way THANK YOU VERY MUCH for the ones that helped me to understand my MRI Scan result) posting a couple of links with studies about the Vitamin D for the ones that say that there's nothing scientific related to its effect:
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