Treatment Advice.

[prab]

Hello there,
My wife just had her second optic neuritis and we are having trouble deciding the right course of treatment, hope you guys can help.

before let me give you some background.

My wife is 27 and since she was a teenager she has chronic migraines.
About 4 years ago she went to a neuro to treat the migraines, did blood tests, mri and etc, everything was ok. And she started taking topiramate daily and toragesic when the she had a migraine crisis. Every 6 months she would do a check-up and everything was fine.

On November/15 she was on a period of extreme stress due to family issues, she had a severe migraine one week and started feeling pain in her right eye, we went to a ophthalmologist the eye was ok and he sent us straight to the neuro, she had optic neuritis on her right eye.
So we stayed on the hospital for 5 days of pulse therapy and exams. She had started a vegetarian diet on Jan/15.
So the exams came back and she had 3 small lesions on the brain (that were new because she was doing once a year mri because of the migraines)
No lesion on the spinal mri, spinal serum liquor was also ok.
At this time her Vitamin D was: 29
B12 was 376 pg/ml
PTH Was: 20,7 pg/ml
Zinc 547
she weights around 120

The brain mri showed this (I used google translate to english because I don't know how to translate this medical terms, maybe some are wrong


Oval lesion with hypersignal in FLAIR and discontinuous peripheral enhancement, located at the posterior horn of the right lateral ventricle and extending to the subcortical region of the edges of the homolateral calcarine sulcus.
Oval image with non-contrasting T2 / FLAIR hypersignal located near the atrium of the left lateral ventricle and extending to the white matter of the mesial occipitotemporal gyrus, perpendicular to the ependymal surface.
Small area with T2 / FLAIR hypersignal in the right cortical region of the right anterior cingulum, without contrast enhancement and very subtle ones next to the lateral ventricle ependymal.
Other encephalic structures with positions, morphology and normal signal characteristics.
Lesions affecting the bilateral periventricular white substance and justcortical of the anterior right cingulum, standing out the lesion with discontinuous peripheral enhancement near the occipital horn and subcortical region at the margins of the right calcarino sulcus. The set of findings favors the possibility of demyelinating substrate disease.

Her vision was back as it was in about 2 weeks
Her neuro said it could be ms but the lesions were too small and could be related to migraines also. He advised us to do some changes on the lifestiyle, prescribed vitamin D and said we should wait any other sign to start treatment. I checked 2 other specialists who advised the same.

So this year she was doing mri every quarter and everything was ok.

We got married in august, spent entire december on italy, so diet was really bad, a lot of gluten and alcohol every day, came back and didn't got the diet on track.
So beginning of dec/16 she was under a lot of stress from work, bad migraines, and woke up with sight problems on her right eye but this time no pain, again to the doctor, she had optic neuritis one more time, this time was lighter than the first one.
Mri showed no new lesions, and the first ones were smaller. Spinal was ok also
vit D was 96
She did pulse again, her sight came back in 5 days.

Now her neuro is advising to start taking Copaxone,, he didn't ruled as ms because no lesions were found but want to start protecting
We are scared about the possible side effects and don't know what course of treatment we should take
We already could trace the link between her stress and the crisis. She is always tense, more like inward stress due to other peoples problems, her neck is very stiff and posture is not that good.
Has anyone been on the same situation? What did you do? I'm reading a lot of stuff and there are so many possibilities. I would really like to hear from others experience.



Thank you

[jimmylegs]

hi i can generally only be helpful where the nutritional aspects are concerned, so here goes:

She had started a vegetarian diet on Jan/15.
So the exams came back and she had 3 small lesions on the brain (that were new because she was doing once a year mri because of the migraines)
No lesion on the spinal mri, spinal serum liquor was also ok.
At this time her Vitamin D was: 29
B12 was 376 pg/ml
PTH Was: 20,7 pg/ml
Zinc 547

my long term vegan diet caused a number of nutrition problems. vegetarian diet should be done with great care and attention to essential nutrients - and imho, especially those known to be low in both vegetarians, and ms patients as compared to healthy controls.

vitamin D 29. is that in ng/ml? assuming so, then it would be good to aim for at LEAST 40 to start, ensuring adequate mineral cofactor status (eg magnesium which i think we can assume is low given the migraine situation and the stress), then continue on to 50 etc.
some advocate high d3 doses long term. i am not one of them, having depleted my magnesium stores after a few years on vit d3 4000IU per day, with very serious health consequences.

re B12 376, aim for 500 pg/ml.

PTH i don't know much about.

zinc, what units was that? mg/L? if ug/L, i normally think in ug/dL... so 54.7... OMG i just converted it to metric 8.4 umol/l!!! that is worse than my worst zinc test result ever. officially deficient. in that case you may want to check serum ammonia, as high levels can lead to encephalopathy. i could basically feel the brain damage when my zinc was low. a lot of processing issues i'd been having cleared up when i fixed serum zinc.
when my zinc was that low, i also had trouble with typical ms low uric acid levels. i tried for years to boost them with food but nothing worked until i fixed the zinc level. also i don't have the study at my finger tips but good zinc status also helps you absorb b12.

i always tell people to go for 120 ug/dl serum zinc (based on levels seen in large groups of healthy controls) so for you that means 1200, quite a ways to go.
you may already know that gluten and alcohol both create higher body demand for zinc. so with low zinc vegetarian diet, not a good combo. eating animal protein with gluten grains helps dampen down undesirable effects. i don't think science has gotten around to doing the study yet, but i'm willing to bet it's because of the added zinc in the equation.

a serum magnesium test would be a very smart idea if you plan to work on the low vit d3. the key with that is definitely to obtain and interpret the result, without relying on any laboratory's current definition of 'below normal'. [edit: i disagree with the current RBC magnesium bandwagon, RBC numbers have the same issues as serum numbers; you have to know how to interpret optimal from within the normal range either way.] either that or just track daily consumption of magnesium rich foods and ensure intake is healthy, along the lines of 7-10 mg/kg body weight per day. most people don't get enough. adequate magnesium in your system helps to absorb d3. i tried to find a decent study re magnesium and migraine, but even some of the latest recommendations in the literature are talking about magnesium oxide, which is an awful form (unless you need a laxative)! there are a number of more absorbable forms out there; i personally prefer magnesium glycinate, and sometimes magnesium citrate. i never touch magnesium oxide. been there, done that, never again!

[lyndacarol]

Welcome to ThisIsMS, prab.

I am unqualified to offer treatment advice because I have no medical background and because I have chosen not to take any FDA-approved MS medications. (In the past, I have used, in turn, Betaseron, Avonex, and Copaxone; but I felt these were ineffective in my case.) The cause of MS is unknown and I feel that no effective medication can be found until the cause is known.

I am glad to see that your wife's vitamin D level has been measured. As jimmylegs addressed, will you inform us as to the unit of measurement used on your wife's tests? Ng/mL is used in the US; nmol/L is used in most of the rest of the world, I believe.

With the assumption that her first vitamin D test result was 29 ng/mL, she was indeed deficient. A vitamin D deficiency can result in optic neuritis, and also migraines. It is good that her neuro prescribed vitamin D. Vitamin D3 (cholecalciferol) is more effective than vitamin D2 (ergocalciferol).

Assuming again that the unit of measurement is ng/mL, her latest Vit D test at 96 is very good (vitamin D experts and some neurologists recommend a level between 80-100 ng/mL be achieved and maintained by patients with neurological symptoms). There have been no reported cases of vitamin D toxicity below 200 ng/mL.

Migraines can also result from a magnesium deficiency. (Magnesium deficiency can also cause lesions.) Among other things, stress burns up magnesium. High doses of vitamin D also use up magnesium. It would be good if the neuro would order the RBC (red blood cell) magnesium test.

Again, as jimmylegs has said, your wife's 2-year vegetarian diet may contribute to her B12 at 376 pg/mL. Dietary sources of vitamin B12 are animal-based (meat, fish, eggs, dairy).

Treatment choice is a personal matter. Do your research, discuss it with her doctor, and be aware that there is NO proven cure for MS.

[ElliotB]

Hi and welcome to TIMS. You mention stress. The elimination of stress is paramount for anyone with a major illness. Exercise (lots of it) is also very, very important.

Should you start treatment without a diagnosis? That is a personal decision. As someone who takes Copaxone and am very pleased with it, I would not have taken it without a diagnosis. Again, it is a personal decision for you to make. Keep in mind that all DMDs, IF they work (no one is even certain if they do), only serve to prevent future relapses and do not affect disease progression or current symptoms. Diet, exercise, lifestyle changes (to remove all stresses), supplements and plenty of sleep may help you over the short and long term.

[prab]

Thank you guys for the reply.
We are facing a very difficult decision, start taking DMD's and face the side effects, even the ones that are still unknown, or try a different approach by diet, supplementation, therapy and etc. As we live in Brazil we have already scheduled an appointment with dr Coimbra, but I'm not sold about the benefits of a very high vitamin D intake and I'm concern about the possible issues related to calcium.

I heard from all the physicians about the mental health and how that can be related at the genesis of ms but I couldn't find any serious research about that, I think because maybe mental state is a hard thing to measure. Neuros told us to do therapy, mindfulness, yoga and all sort of things together with a regular treatment, I don't know if it would help but i'm sure it will do no harm, I just don't want to focus to much on something that won't bring any benefit.

hi i can generally only be helpful where the nutritional aspects are concerned, so here goes:

Before I've posted I read some of your posts about your experience about being vegan and the nutrient deficiency that you shared. That raised my concern about her nutrition habits. She started taking Omega and a B-complex to supply nutrients that are usually low in a vegetarian diets.

Below are the exams she had at the first ON episode and now the second. I'm not seeking professional medical help but rather hear experiences specially because people here tend to disagreet about reference values, and most doctors we've seen tend to agree with reference.

1 episode
Vit D 25 OH = 29 ng/mL - reference is 30 - 199
B12 = 376.0 pg/mL - reference is 239 - 931
Zinc = 547.45 µg/dL - reference is 400 - 800
Magnesium = 1.8 mEq/L - reference is 1.3 - 2.1
The RBC I'm not sure if it's this exam but I think it's : Hemácias : 4.48 x10~6/uL - reference 3.90 - 5.00

2 episode
Vit D 25 OH = 92 ng/mL - reference is 30 - 100
Magnesium = 1.9 mEq/L - reference is 1.3 - 2.1
The RBC I'm not sure if it's this exam but I think it's : Hemácias : 4.44 x10~6/uL - reference 3.90 - 5.00
B12 and Zinc exams were not done

[lyndacarol]

As we live in Brazil we have already scheduled an appointment with dr Coimbra, but I'm not sold about the benefits of a very high vitamin D intake and I'm concern about the possible issues related to calcium.

...

Below are the exams she had at the first ON episode and now the second. I'm not seeking professional medical help but rather hear experiences specially because people here tend to disagree about reference values, and most doctors we've seen tend to agree with reference.

1 episode
Vit D 25 OH = 29 ng/mL - reference is 30 - 199
B12 = 376.0 pg/mL - reference is 239 - 931
Zinc = 547.45 µg/dL - reference is 400 - 800
Magnesium = 1.8 mEq/L - reference is 1.3 - 2.1
The RBC I'm not sure if it's this exam but I think it's : Hemácias : 4.48 x10~6/uL - reference 3.90 - 5.00

2 episode
Vit D 25 OH = 92 ng/mL - reference is 30 - 100
Magnesium = 1.9 mEq/L - reference is 1.3 - 2.1
The RBC I'm not sure if it's this exam but I think it's : Hemácias : 4.44 x10~6/uL - reference 3.90 - 5.00
B12 and Zinc exams were not done

I'm very interested to hear the details of your experience with Dr. Coimbra. In fact, I suspect that followers of "Coimbra High-Dose Vitamin D Protocol," a sub forum here at ThisIsMS http://www.thisisms.com/forum/coimbra-h ... tocol-f57/ would all be interested.

Dr. Cicero G. Coimbra's Vitamin D Protocol for Multiple Sclerosis (3 min.), video date: Feb 28, 2016


Dr. Cicero Coimbra, Brazil, has treated over 4000 patients for autoimmune diseases, consisting of vitamin D3 (on average 1000 IU per kg of body weight daily) + high doses of DHA + restriction of calcium (because of calcium, dairy is not permitted) + good hydration (2.5 L water). In Brazil, 10,000 people follow this treatment (requiring 6 months to 2 years of treatment).

High doses of vitamin D do require additional magnesium. Careful observance of his guidelines should avoid potential problems in many areas. (I believe this includes B12 supplementation, which would be good to discuss with him in view of your wife's level of 376 pg/mL.)

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O.

On page 11:

There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.


Also on page 11, these authors state: “For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/mL.”

http://b12awareness.org/could-it-be-b12 ... diagnoses/


Please share your experience with Dr. Coimbra with us here.

[jimmylegs]

hi the good news amongst an unpleasant situation is that at least you can take action on the nutrition side either way, if you are so inclined (and it sounds like you are )

i haven't spent much time on dr. c since he appeared, on my radar at least, after having personally had a very serious negative high dose vit d3 experience. i'd already been having some debate here on the forum, with other people advocating aiming for high d3 levels right off the bat, with no attention paid to mineral cofactors. i spent some time really trying to find long term high dose studies but non exceeded 6 months duration. i can appreciate the good dr has a few more published journal articles than i (who have none to date lol) but when i search google scholar for related work of his, once again i see that familiar 6 month limit (not to mention very low n values).
http://www.tandfonline.com/doi/abs/10.4161/derm.24808
it took a couple of years for me to run into issues. i don't even know if dr c bothers with assessing vit d3 cofactors other than advocating the low calcium diet, or considers the high dose treatment a short term therapeutic thing or a reasonable long term status quo daily approach.
because dr c's published study was related to psoriasis and vit d3 research specifically:
http://www.bmj.com/content/320/7240/963.short
6038 patients in the statistical analysis, much better
i can relate to this one, even though lots of sun works way better than high dose d3 for my skin at least. (calcipotriol helps for sure but it does send my serum 1,25(OH)2vitd3 into the stratosphere so i try to avoid it as much as possible)
i'm very critical of others' research methods, for someone whose own study design consistently has to use n=1 ;)

i can say for sure where mental health issues are concerned, that there is a straight line relationship between nutrition and mental / emotional status. any doc knows the b6/b12 combo for mood (oh hey b12, you again lol). magnesium loss is exacerbated by physical and emotional stress, magnesium deficiency has been used in mice to create 'mouse depression' and then test the efficacy of antidepressant drugs (i shit you not, this line of research actually exists), magnesium is lower in ms patients and can be depleted further by high doses of vit d3.

personally, i spent much of my life in a chronic high anxiety state. it disappeared after the right pharmacist turned me on to the relationship between d3 and magnesium. in hindsight, i was magnesium deficient from the start, and being on high dose d3 for years just put me over the edge. i thought i was going to die. but when i did what that wonderful, randomly encountered pharmacist said and adusted my vit d/magnesium routine, things improved in 2 days and then it ultimately took me months, even years, to get tissue stores built up to the point where i could let a day go without feeling the consequences. i was just brought up in a status quo low magnesium and high stress environment. it was just normal life. so many things have improved since fixing mag and nutrition in general.

re things that are typically low in vegetarian diets, good to hear re b complex and omega. i would be very interested to hear serum ferritin and serum zinc status. vegetarians can usually expect to be low zinc high copper, which is not an ideal ratio at all. there are strong links between zinc and ON as well.

re zinc units. not making sense yet. because the units are ug, i am more certain it's meant to be ug/L not ug/dL
units conversion info: http://hijazi.us/ClinicalData.htm
the reference range for zinc is around 11.5-18.5 umol/L. that is about 75 - 120 ug/dl
my worst level was 8.6 umol/L. to convert, 8.6 umol/L / 0.153 = 56 ug/dl
that is consistent with a level of 547 ug/l or 54.7 ug/dl converting to 8.4 umol/L
if i am correct, i am still disconcerted by that reference range.
in ug/L, 400-800 converts to 6.1-12.24 umol/L, which is low. it looks like it should be 750-1200.

a low lab reference range suggests a lot of sick people's tests programming the reference range info for that lab's equipment. you don't get the high end of the range reflected, because those people are all out of the hospital being healthy.
i've seen that before, for one example at a hospital's infectious disease clinic, with a zinc reference range set at 9-14 umol/l (ie 58-91 ug/dl or 580-915 ug/L). the lab's 'normal range' becomes in effect the statistical 'normal' of patients only, nobody healthy included.

out of curiosity i did search for 400-800 and ug/dl on their own. found *two* instances online, period, the end. neither to do with zinc:

http://www.atsjournals.org/doi/full/10. ... 0702-178OC
"substantial differences were found in the baseline levels of AGP between mice and humans (<100 μg/ml vs. 400–800 μg/dl) as described previously"

https://www.scitechnol.com/school-food- ... t-RG6c.pdf
"4) urine VB2 of [400, 800) μg/dL is defined inadequate and <400 as deficiency."
i would say there's most likely something off with the lab's printout.

more about nutrition and optic neuritis:
Blood Plasma Levels of Microelements in Patients with History of Optic Neuritis
http://www.tandfonline.com/doi/abs/10.3 ... 013.833244

only a small group, but interesting things going on. elevated Cd would suppress zinc utilization, so would high Cu (you'd expect both high Cu and low Zn in vegetarians). with low in iron both ON groups as well, you'd want to be careful adding zinc without ensuring good balanced zn+fe intakes from food, and not taking any zinc or iron supplements on their own. still curious if there's a serum ferritin test anywhere in the files? would be good info to have on hand. bummer, my library is not subscribed to that journal so i can't get into that full text. i would love to see details on the zinc status, and copper zinc ratios for these ON patients. anyway that's all on zinc for now

re magnesium (and other ) tests. these can either 'serum' or 'rbc' eg 'serum magnesium' or 'rbc magnesium'. just the difference between serum and red blood cell levels of whatever. i think your hemacias test is the basic rbc count, not anything *in* them.

with magnesium in general you want levels to be well into the top end of the normal range. in some studies, the healthy controls are higher than what is broadly considered 'normal' for magnesium. this sounds weird unless you know that the WHO questions the state of our reference ranges for magnesium, as potentially having been drawn from a population with generally suboptimal magnesium status (and widespread sales of pain, PMS and depression meds giving evidence). i would suggest working towards 2.2 mEq/L. if it helps, think of it at a different scale, eg going from 180 to 220. that is exactly how i think of mag in SI units. the ranges used around here are around 0.7 to 1.1 umol/L. i just mentally think of it as 70-110. it seems weird to zoom in that close, but when healthy and patient means so consistently appear at opposite ends of that tiny, tiny magnesium range, i'll do it and make sure i'm in the healthy zone

if you can push that mag level up, serum d3 response should be improved. i noticed (more than) tripled serum dose response to d3 after fixing mag status. others here have been helped to push recalcitrant low vit d3 levels into desirable ranges, just by adding mineral cofactors to a previously unsuccessful d3 regimen. details details details! i have to get back to work ttfn