20y female, discouraged "Perfectly healthy" but MS Symptoms

[younglady]

I'm posting in here because while my symptoms do not include depression, I am just totally worn down.
I was presumed to have Multiple Sclerosis after two years of symptoms:

Worsening vision
Electric shocks in head
Severe Vertigo
Extreme Fatigue
Tingling, numbness, and electric shocks in arms or legs
Difficulty thinking/focusing/finding words
Confusion
Altered Reality
----

My doctors gave me the following tests:

MRI Brain
MRI Cervical Spine
EMG - Left Leg
Nuero-Opthomologist visit
Lyme, Vitamins in blood, Hormones, Creatine, ANA, Glucose, just about a million antibody tests.

Out of all of these tests the ONLY thing that has come back abnormal is Epstein Barr Virus (I had mono when I was young) and slightly high iron.

This has been two years of symptoms. I cannot drive, or work outside the home. I am twenty, and just married.

My question is, has anyone who got a MS diagnosis gone through this? I mean, two years of tests only to find out I'm basically "As healthy as can be." It's heart breaking every time I get another test with no answers, not to mention the comments from friends "Do you think it's all in your head?" Or worse, family. Praise God that my husband, who has to see me at my good and bad, knows that these symptoms are real and terrible. Is it possible I still have MS?

Thank you.

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EDIT TO ADD: There may be confusion, I have NOT been diagnosed with MS. Doctors presumed it was what I had until these tests all came back positive. Extensive blood work results are posted below.

[lyndacarol]

I'm posting in here because while my symptoms do not include depression, I am just totally worn down.
I was presumed to have Multiple Sclerosis after two years of symptoms:

Worsening vision
Electric shocks in head
Severe Vertigo
Extreme Fatigue
Tingling, numbness, and electric shocks in arms or legs
Difficulty thinking/focusing/finding words
Confusion
Altered Reality
----

My doctors gave me the following tests:

MRI Brain
MRI Cervical Spine
EMG - Left Leg
Nuero-Opthomologist visit
Lyme, Vitamins in blood, Hormones, Creatine, ANA, Glucose, just about a million antibody tests.

Out of all of these tests the ONLY thing that has come back abnormal is Epstein Barr Virus (I had mono when I was young) and slightly high iron.

This has been two years of symptoms. I cannot drive, or work outside the home. I am twenty, and just married.

My question is, has anyone who got a MS diagnosis gone through this? I mean, two years of tests only to find out I'm basically "As healthy as can be." It's heart breaking every time I get another test with no answers, not to mention the comments from friends "Do you think it's all in your head?" Or worse, family. Praise God that my husband, who has to see me at my good and bad, knows that these symptoms are real and terrible. Is it possible I still have MS?

Welcome to ThisIsMS, younglady.

Since tingling/numbness (a.k.a. peripheral neuropathy – this is the most commonly mentioned symptom of a B12 deficiency) in the arms or legs is in your list of symptoms, I assume your doctors ruled out a possible vitamin B12 deficiency thoroughly with a HoloTranscobalamin (HoloTc) test, a homocysteine test, and a methylmalonic acid test (when you say "doctors gave the following tests: Vitamins in blood…").

A simple B12 test alone is not adequate to rule out a deficiency.

Any person at any age (even 18 or 20) can develop a B12 deficiency. Your symptoms are common to many conditions, including a B12 deficiency.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available through your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

Read through all the tabs at the B12 Awareness website for additional information. The videos posted there are very good.

I know your symptoms are very real and very terrible. Just because you were diagnosed with MS two years ago does not mean you cannot have a vitamin B12 deficiency NOW – you could have developed it in these last couple years.

[younglady]

Here's my blood work to date - I have indicated abnormal results.

Estimated GFR
Zinc
Creat
ANA
Estimated Average Glucose
VGKC-Ab, Serum
Jo 1 Ab, IgG, S
Scl 70 Ab, IgG, S
RNP Ab, IgG, S
Sm Ab, IgG, S
SS-B/La Ab, IgG, S
SS-A/Ro Ab, IgG, S
AGNA-1, Serum
AChR Ganglionic Neuronal Ab, S
Tissue Transglut IgG Ab
25-H D Total
Tissue Transglut IgA Ab
CRMP-5, Serum
PCA-2, Serum
ANNA-3, Serum
PCA-Tr, Serum
Gliadin IgA
Gliadin IgG
EBV VCA/IgM
EBV VCA/IgG POSITIVE (Abnormal)
TIBC
Striat Muscle Ab
Sed Rate
Pyr 5-Phosphate
PCA-1, Serum
Methylmalonic Acid QN, S
Iron % Sat HIGH (Abnormal)
Iron HIGH (Abnormal)
IgA
Ferritin
Endomysial
EBNA POSITIVE (Abnormal)
P/Q-Type Calcium Channel Ab S
N-Type Calcium Channel Ab S
B12
ANNA-2 Serum
ANNA-1, Serum
Amphiphysin, S
AChR Muscle Bind Ab
A1C
25-Hydroxy D3
25-Hydroxy D2
1 25 Vit D
Urea Nitrogen
Creatinine
eGFR NON-AFR. American
eGFR African America
BUN/CREATININE RATIO
SODIUM
POTASSIUM
CHLORIDE
CARBON DIOXIDE
CALCIUM
RED BLOOD CELL COUNT
HEMOGLOBIN
HEMATOCRIT
MCV
MCH
MCHC
RDW
PLATELET COUNT
ABSOLUTE NEUTROPHILS
ABSOLUTE LYMPHOCYTES
ABSOLUTE MONOCYTES
ABSOLUTE EOSINOPHILS
ABSOLUTE BASOPHILS
NEUTROPHILS (52.8%)
LYMPHOCYTES (38.2%)
MONOCYTES (5.8%)
EOSINOPHILS (2.6%)
BASOPHILS (0.6%)
TSH
RDP (DX) W/REFL TITER
ANION GAP HIGH (ABNORMAL)
CO2
CALCIUM
TOTAL PROTEIN
ALBUMIN
TOTAL BILIRUNIN
CONJUGATED BILIRUBIN
UNCONJUGATED BILIRUBIN
ALKALINE PHOSPHATASE
AST
ALT
CBC WITH AUTO DIFF
WHITE BLOOD CELL COUNT
MEAN CORPUSCULAR HGB
MEAN CORPUSCULAR HGB CONC
RED CELL DISTRI WIDTH
RHUMATOID FACTOR
LYME DISEASE, BLOT IGG
----------------------------------

Is that enough to know if there is a vitamin b deficiency?

[jimmylegs]

hi and welcome YL

off the top i'm going to say no. nothing there indicates a b12 deficiency.

do you have numbers and units for any of that list? 'normal' often isn't good enough and more detail is needed. i am especially interested in more detail on zinc, ferritin, b12, 25-hydroxy vitd3 and 1,25-dihydroxy vitd3 status.

may i ask you about a few things? such as dietary preferences? where you are on the activity spectrum from sedentary to athletic? whether you are a regular user of any over the counter or prescription meds or any kind? any family history of inflammatory illness? or any other kind of illness? what your symptoms are specifically?

what are your normal day to day sources of iron? i'm wondering if there's a dietary component to your iron situation, or if the iron deal is just part of the viral infection scenario.

i've helped people get rid of a chronic ebv vca igg situation before, if you're interested in going after some of these issues using a diet and nutrition approach as part of your overall self care.

[younglady]

hi and welcome YL

off the top i'm going to say no. nothing there indicates a b12 deficiency.

do you have numbers and units for any of that list? 'normal' often isn't good enough and more detail is needed. i am especially interested in more detail on zinc, ferritin, b12, 25-hydroxy vitd3 and 1,25-dihydroxy vitd3 status.

may i ask you about a few things? such as dietary preferences? where you are on the activity spectrum from sedentary to athletic? whether you are a regular user of any over the counter or prescription meds or any kind? any family history of inflammatory illness? or any other kind of illness? what your symptoms are specifically?

what are your normal day to day sources of iron? i'm wondering if there's a dietary component to your iron situation, or if the iron deal is just part of the viral infection scenario.

i've helped people get rid of a chronic ebv vca igg situation before, if you're interested in going after some of these issues using a diet and nutrition approach as part of your overall self care.

Hi! Thank you for responding. Specifics as you asked:

Zinc, 0.89 mcg/mL
Ferritin, 23 mcg/L
B12, 319 ng/L
25-hydroxy vitd3, 27.3 ng/mL
1,25-dihydroxy vitd3, 39 pg/mL
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My dietary preferences are healthy. Almost no processed foods, never fast food, no fried foods. Avocados, nuts, mozzarella for snacks, lots of chicken and salads for meals - the only exception is on Sundays after church my husband and I eat a publix pizza and salad.

I am currently doing 2 p90x workouts per week. I was an elite gymnast until 13, weight lifting and dance after that, and the past few years have been pretty active. I was very sedentary this summer when my symptoms were the worst they have ever been (couldn't walk because of the vertigo/dizziness, and the numbness in my legs made it hard to walk not to mention fatigue), but am currently feeling a lot better in the fatigue dept since introducing these workouts. We also walk daily.

No over the counter, and no prescription meds. No family history of inflammatory illness, or any other kind other than glaucoma and celiac (which as you can see I do not have). No family history of what my symptoms are like.

I hardly eat iron filled foods, which is why I was so surprised by it. I rarely eat beef, not even spinach regularly (my salads are usually cabbage and slaw base). I don't even take a multivitamin.

As far as the EBV - I don't have a current infection. That's what my IgG serum showed. It was a past infection (when I was young) - there is no sign that I have a current infection, doc says.

Thank you so much for your help.

[jimmylegs]

OK love the detail this we can work with.

from the description, your diet sounds generally great! will be good to dig into the details and look at nutrient density and potientially pro-/anti- inflammatory balance, ratio of omega 6 to omega 3 and so on.

jeeeez good old p90x. i've run into the famlliar athletic nutrient depletion scenario with those before. which of the nutrition phases are you using right now, and how long have you been on that program? i havent seen the details before, and on the surface the descriptions are talking about macronutrients only. so i'm really curious about the micronutrient details for the different phases.

depending on your answer to the above, you may already be aware that recommended daily amounts aren't really enough to compensate for much in the way of exercise. so you can ignore the % daily info on the food charts to follow, and just watch your milligrams intake, your blood levels, and how you feel to make sure your intakes are keeping up with your body's demands for nutrients.

so with that said, re your levels, zinc is down. ms patients have low normal serum zinc. healthy controls levels are much higher. aim for 1.20 mcg/ml.
can you review these healthy zinc sources and tell me how many mgs you think you are getting daily? also any other potential dietary sources of zinc?
http://www.whfoods.com/genpage.php?tnam ... #foodchart
bringing zinc up will have a reducing effect on iron. it could be informative to push zinc levels up and see what happens to the serum iron, iron % sat and serum ferritin. can you post serum iron and iron % sat numbers as well? would like to compare to other levels out there in the literature. what's abnormal at one lab can be normal elsewhere, and vice versa!

you'll want the b12 up quite a bit too. aim for at least 500 ng/L to start.
healthy b12 food list: http://www.whfoods.com/genpage.php?tnam ... #foodchart

your d3 would be better up around 40 at least. but you shouldnt mess with it without ensuring good magnesium status.
here's the healthy mag food list - can you tell me if you're getting into the 500mg per day range, for dietary mag?

looks like i will need to read more about ebv stuff! not my particular focus BUT, i did have a close family friend who reported i suppose active EBV over a number of years, and we managed to beat it into submission, supported by improved lab findings, with nutritional support for her immune system

hope that helps

[lyndacarol]

You have certainly been keeping the lab technicians busy!

I have no medical background, but I will share my understanding of the testing and results required to determine a vitamin B12 deficiency.

Initial testing usually includes:

#1 Serum B12 test
#2 Serum folate test
#3 Serum homocysteine test
#4 Serum (or urinary, which is considered more accurate) methylmalonic acid test

From your list, I see that you have had the B12 test; and, apparently, the serum methylmalonic acid test. Please be aware that many doctors and scientists feel that the labs in the US have outdated standard ranges for B12 and that the cutoff for identifying a deficiency is set too low. In addition, taking vitamin B supplements before testing will skew the results; likewise, taking antibiotics when being tested for methylmalonic acid will cause the results to be misleading.

Since the serum B12 test measures the TOTAL B12 in the blood, and does not indicate the amount of B12 being carried on the transcobalamin transporter molecule (the only transporter that can get the vitamin B12 to the cells/tissues where it is used), the amount of B12 in the blood can appear to be good, but there can still be a deficiency in the cells. Many scientists now consider the HoloTc test to be a more accurate measure.

In my previous post, I urged 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.: 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).

… 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.

To compare your B12 test results to those recommended by the authors, 1 pg/mL = 1 ng/L; so in the opinion of the authors, your B12 level would be considered deficient. This may warrant further discussion with your GP, or a hematologist. If caught early, B12 deficiency symptoms may be reversible.

[younglady]

jimmylegs

I am not doing the p90x diet, nor am I doing the whole program. I just do two of their workouts a week.
Daily zinc from that list: Approx 4.24 (mg).

I don't know anything about my magnesium. Thanks for the b12 food list! yum! From your list, I would be getting 2.17 (mcg) daily from my diet. I do currently take, (totally forgot to mention this) NingXia Red from Young Living, which I do believe has B vitamins.

Thank you so much for your help and suggestions.
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lyndacarol,

Thank you, I will up my b12 levels.

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Still no one has answered my question, is "With all of my test results being the way they are, could it still be MS? Has anyone gone through all this diagnostic work, and still gotten an MS diagnosis later?" Thank you!

[jimmylegs]

hey there, ok more great info!

so with zinc, it looks like you might want to triple your daily intake for starters. my toddler-y nephews get 8mg per day just in their little gummie multis. if there's anything you eat that was NOT on the healthy list, might be worth looking up the contribution from the 'unhealthy' quarter.

daily zinc intake recommendations for patients with ms range from 25-50mg per day. when you supplement zinc, you have to start worrying about balance with iron and copper etc etc. so if you can do it with food, awesome. question: how do you feel about oysters? they are not on the chart, but the same site promotes them elsewhere, in context of this recommended weekly seafood chowder:
http://www.whfoods.com/genpage.php?tname=recipe&dbid=32
chowder nutrition details: http://www.whfoods.com/genpage.php?tnam ... e&dbid=188 check it out! 65mg zn per serving.

re magnesium - oops i missed including the link. check it out: http://www.whfoods.com/genpage.php?tnam ... #foodchart
i'm just google searching on whfoods and the nutrient name to find these charts. you can do the same for all the essential nutrients to make sure you're on the right track. i emphasize certain ones more than others because they are so regularly flagged in the literature as being at one level in patients vs a whole different scenario in healthy controls.

i love your reaction to the b12 list looks like you're getting the basic RDI from diet. given your 'normal' b12 levels, anyone would say you're fine. but if we are interested in optimal and not just 'normal', it looks like the RDI is not getting you there. so, as already discussed it will likely be a good idea to increase your dietary b12 intake. for context, many ppl take thousands of mcgs of supplemental b12 per day.

i'll have a look at ningxia red as i haven't heard of it before to my recollection.

as for your original question - yes people can have symptoms that don't match the testing criteria for ms for years, continue living just as they always have, getting incrementally worse over time but never necessarily falling perfectly into a neat diagnostic box, and then finally one day they'll get bad enough to fit some scenario or other (finally! a ~diagnosis~ ... which may or may not end up being correct).

what i can tell you based on the more specific nutrient results you have provided, is that your levels are consistent with those often seen in ms cases (not to mention a wide variety of other chronic ailments). the serum targets i have mentioned will put you into a space that should be more consistent with health and less consistent with chronic illness. it's FAR better to start working on this with diet early, than wait til the wheels really come off and then try to megadose everything back into line after the fact.

[lyndacarol]

lyndacarol,

Thank you, I will up my b12 levels.
...Talk to your doctor before simply self-treating. He may prefer injections rather than oral supplementation. Also, if any further testing is to be done in order to establish your B12 status, any vitamin B supplementation will skew test results.
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Still no one has answered my question, is "With all of my test results being the way they are, could it still be MS? Has anyone gone through all this diagnostic work, and still gotten an MS diagnosis later?" Thank you! ...Your symptoms are common to many conditions… Yes, it could still be MS.