This Is MS Multiple Sclerosis Knowledge & Support Community

Hello everybody,

I'm a 31-yo female and this is my first post after reading a lot.

I was taken into the hospital with numbness from my toes up to my neck plus 3 fingertips last March. First thoughts were directed to Guillain-Barre but testing did eventually point more towards MS. The MRI found an active lesion in my spine (C4-C5), an inactive lesion somewhere in the brain and LP showed oligl bands in the CSF. Anyway, after 3 days solumedrol drip my numbness quite rapidly disappeared. All thats left is a slight tingle in my hands, and some electricals racing up and down the spine now and then. So, guess that's the best you can hope for this quickly? They sent me home with 3 times 100,000 IU Vit D3.

Officially I do not have a diagnosis yet, and I have to come back in July for a follow up MRI of spine and brain, and an appt with a neuro.

I have done quite some internet reading since, and defo believe that to start with I want to get all my vitamins and minerals right. I just received my medical record with a whole bunch of test results, including vit B12, folate and Vit D OH25.

What other values should I get tested to get a complete picture of minerals and vitamins to start from?

Thanks a lot.

mevrouw wrote:I'm a 31-yo female and this is my first post after reading a lot.

I was taken into the hospital with numbness from my toes up to my neck plus 3 fingertips last March. First thoughts were directed to Guillain-Barre but testing did eventually point more towards MS. The MRI found an active lesion in my spine (C4-C5), an inactive lesion somewhere in the brain and LP showed oligl bands in the CSF. Anyway, after 3 days solumedrol drip my numbness quite rapidly disappeared. All thats left is a slight tingle in my hands, and some electricals racing up and down the spine now and then. So, guess that's the best you can hope for this quickly? They sent me home with 3 times 100,000 IU Vit D3.

Officially I do not have a diagnosis yet, and I have to come back in July for a follow up MRI of spine and brain, and an appt with a neuro.

I have done quite some internet reading since, and defo believe that to start with I want to get all my vitamins and minerals right. I just received my medical record with a whole bunch of test results, including vit B12, folate and Vit D OH25.

What other values should I get tested to get a complete picture of minerals and vitamins to start from?

Welcome to ThisIsMS, mevrouw.

Your symptoms began just two months ago, right? The signs and symptoms you described are nonspecific; they are common to many conditions.

I don't understand your statement, "testing did eventually point more toward MS." There are no definitive tests for MS. MS is a diagnosis of exclusion, made after more likely possibilities have been ruled out.

Even lesions are found in other conditions: celiac disease, migraines, vitamin B12 deficiency, etc.; oligoclonal bands are also found with B12 deficiency.

Numbness/tingling in the legs and arms is the definition of "peripheral neuropathy." This is a common symptom in many conditions. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following (Since you do not have the MS diagnosis yet, you are probably in the middle of the following testing.):

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Can I assume these were the tests that have been done? Starting with the first entry… I wonder if the outdated, inaccurate "serum B12" was performed; or if it was the newer, more reliable HoloTc (This is not yet available everywhere.) If the "serum B12" was used, were the results confirmed by a serum homocysteine test and a serum (or urinary) methylmalonic acid test?

hey there, did you get your own copy of the results for vit B12, folate and Vit D OH25?

for additional reading on other nutrients, you might find the first thread in this list of relevant site search results informative:
http://www.thisisms.com/forum/jimmylegs ... ds=targets

Hi all,

Thanks for the replys. I have all my medical files at home, so see below some of the values. There are many so if some other value would be useful I may have it as well. I live in France by the way, so I hope it is compareable.

thanks so much



sodium 141 mmol/l
potassium 4.28 mmol/l
calcium 2.25 mmol/l
25-OH vit D 10.5 ng/ml
vitamin B12 366 pg/ml
folates 9.8 ng/ml
ECA (enz convers angiotens) 36 IU/l


hep B negative
hep C negatice
HIV/Aids negative
EBV positive, old
herpes simplex, negative
VAricella Zona, positive immunitaire
cytomegalovirus negative
legionella negative
chlamydia negative
lyme igg and igm negative

Thyroid
TSH 1.701 mUI/l
t4 free 15.6 pmol/l
T3 free 4.56 pmol/l

Are you currently taking vitamins and other supplements? If so, what are you taking? Your D level appears to be on the lower end of the scale. Are you taking vitamin D, if so how much daily and how long have you been taking it?

Not taking anything. my blood was tested after I first had numbness beginning of March. after the test I got 3g of solumedrol and 4 or 5 times a 100,000 IU dose of vit D3. Haven't been tested yet since.. have another appointment in June and would like to get some additional nutrients tested so I have the complete picture...

I am still kind of new to this whole medical stuff..

mevrouw wrote:What other values should I get tested to get a complete picture of minerals and vitamins to start from?

Your serum folate test result at 9.8 ng/mL is low when compared to my lab's standard range of 7.0-31.4 ng/mL (Your lab's standard range may be different, since these ranges are established locally.)

Your vitamin B12 (I assume this was the "serum B12" which measures total B12 in the bloodstream and not specifically the portion of B12, the HoloTranscobalamin, that can reach the cells.) was 366 pg/mL, which according to the authors, Pacholok and Stuart, falls within the "gray zone."

From the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O.: http://b12awareness.org/could-it-be-b12 ... diagnoses/

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).

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

The authors go so far as to say that the B12 level should be at 1000 pg/mL or more if the patient has presented with neurologic symptoms.


Since B12 deficiency often manifests with megaloblastic anemia and the common symptoms of anemia, the MCV (mean corpuscular volume) found in your CBC (complete blood count), which I assume was done for you – you have the number value, will indicate megaloblastic anemia if the number is in the high-end of the standard range. A high MCV indicates enlarged red blood cells.

Also within your CBC should be an entry for hematocrit (HCT here); a low hematocrit can indicate anemia.

According to the following video and its charts, your folate number and your B12 number could indicate deficiencies in one or the other; but neurologic symptoms (which you have) would appear with a B12 deficiency. A methylmalonic acid test with a high result would confirm a B12 deficiency. I think it would be worthwhile for you to have a methylmalonic acid test.



Stomp On Step 1 presents: "Folate & B12 Deficiency, Megaloblastic Anemia Hypersegmented Macrocytic Methylmalonic…" (13-minute video)

(@9:49) a series of charts explaining that folate and B12 deficiencies share some test results: hematocrit will be low; MCV will be high; homocysteine will be high – but (@10:40) only in B12 deficiency will methylmalonic acid be high and the neuro symptoms are present.

In addition, a homocysteine test (if the results are high) could confirm a B12 deficiency.

These are my suggestions; others will share theirs.

D3 and B12 are very important, but so are all the other vitamins. My suggestion... you should be taking at a minimum a good multi, and supplement with others. What others you should take and how much is up to you. I take a lot of vitamins and supplements A couple of basic suggestions, higher doses of D3 and a good B complex, Omega 3 with EFAs (essential fatty acids) at a minimum. There are many, many choices when it comes to vitamins and supplements - the sky is the limit!

What kind of diet are you following, if any?

hi Lyndacarol,

thanks for your detailed answer.

I looked up the values: MCV 86.6 fl (normal between 80.0/95.0), the hematorcite is 0.40l/l (normal 0.37-0.47), which seems to be in order if I compare with the normal range values..


hi ElliotB,
At the moment I rake a multivitamin with fish oil. i'm unsure if it is wise to start taking additional daily virD3, since I did get 500,000 IU of it in march/beginning April.. maybe I will add some vitB..?

for the diet, i do not follow anything special .. I think I eat relatively healthy and balanced (lots of veggis, little processed foods) although I do like my sine, cheese and bread (sorry, live in france), but since the symptoms I try to limit sugar and gluten (but it's hard to stick to it to be honost).. the diets proposed seem a bit contradictory wrt meat, any tips?

so are all the other vitamins

thoroughly agree. essential vitamins and minerals. how much you take is indeed 'up to you' - but should be an informed decision based on recommended daily amounts, and individuals doing the math on what they eat/drink/take/do and taking into consideration how various factors can influence absorption/utilization/retention etc, and then deciding on how best to boost food sources, and then getting into what dose of which high quality supplement might cautiously be added to the mix.

a good first step is to just read up on daily amounts needed for 5 vits and 5 minerals, based on gender, age, and if you can find it, activity level.

mevrouw wrote:I looked up the values: MCV 86.6 fl (normal between 80.0/95.0), the hematorcite is 0.40l/l (normal 0.37-0.47), which seems to be in order if I compare with the normal range values…

.. maybe I will add some vitB..?

Agreed. The MCV value at 86.6 fl (with the standard range of 80.0/95.0) appears to be good. Likewise, the hematocrit value of 0.40

Please understand that in the US (it may be done differently in France), a lab's standard range is calculated as the mean (average) of every test score (from sick people and healthy) and by determining and adding the standard deviation. The standard range is not necessarily what one would consider "normal." It is definitely not optimal.

As for adding some vitB… Do not take vitamin B supplements before testing, if planned, as they will skew the test results. Also, please be aware that the folic acid in B Complex may mask a vitamin B12 deficiency, allowing neurologic symptoms to worsen.

I suggest you have a western blot Lyme test through Ingenex.com. They are more accurate then Quest or Lab Corp.
Lyme triggered the MS for me.

hi again, just reviewing the results you posted. re the d3, normally for best immune system function you'd want to be at more like 40 ng/dl.

questions:
have you had follow-up testing to see what your serum response has been like over time?
if not great, i'd suggest looking closely at cofactors.

have these 100,000 IU doses of d3 been balanced with any mineral cofactors?
if not balanced, you likely won't be getting the most bang for your buck.

i used to get a reasonable increase (~50 nmol/L) from a solid d3 megadose. but once i identified and corrected zinc and magnesium deficits (i corrected a lot of things in general, but those were the most specific, measured corrections), my response to a dose of d3 more than tripled (~170 nmol/L). probably the mag had more to do with it than the zinc, but i was pretty convinced that the zinc factored in for ages.

it's pretty common knowledge that loading one thing can cause trouble for cofactors. try reading up on what loading alpha tocopherol can do to gamma tocopherol status, or what loading up on iron supplements can do to zinc, what loading zinc can do to copper, what loading calcium can do to magnesium and iron, etc etc etc.

i notice they tested a few things for you, but notably absent are serum zinc and serum magnesium. both interact with d3. since these two are often low in ms patients but havent bridged the knowledge transfer gap from science to practice quite yet, if you decide to follow up you'll have to request these specifically, ensure you get your own copy of results, and be prepared for the numbers to look 'normal'. however, if low normal you'll be consistent with ms patients and not with healthy people who on average have high normal status.

Hi All, thanks again for all the replies. I am working on a list of things I would like to get tested and will post it here when it will be a bit finished. My neuro appointment is only in July, so I do not think I can get anything tested before.

Hi All,
I have made an initial list of what to test. Any comments are more than welcome !

Cheers.



CBC

Vitamin D (25(OH)D)
Vitamin B (B12) What other B vitamins?
Vitamin A
Vitamin C
Vitamin E
Vitamin K

Calcium
Magnesium
Zinc
Copper
Manganese
Iron

Cholesterol ?