just want to figure out what's going on with my body

[oyster]

hello, all. i've got so many weird things going on and am curious to hear your thoughts. here's what i have:

-intermittent hand grip weakness in left hand. i used to laugh about this, but it's not funny anymore. it's happening more frequently and lasts about an hour each time.
-painful nerve pinches all over my body, especially legs, left side rib cage, left upper arm, and skull.
-hyperreflexia with left knee at doctor's appointment (waiting on my neuro consult- jan 19th)
-waking up in the middle of the night every other night or so with just my legs sweating like crazy. it's bizarre- nothing but my legs, and they're soaked.
-fasciculations all over, unrelenting, like every 2 minutes. (though i'm trying not to fret about this. i've read it's very common)
-vertigo, which i've had for years. but it's happening more frequently now, and lasts up to 1 minute per episode.

b12, thyroid- normal. curious about magnesium because i seem to have many sx of mg deficiency.

thank you for reading.
<3

[lyndacarol]

i've got so many weird things going on and am curious to hear your thoughts.…

b12, thyroid- normal. curious about magnesium because i seem to have many sx of mg deficiency.

Welcome to ThisIsMS, oyster.

Here are my thoughts: in addition to vitamin B12, please consider requesting vitamin D3 testing, a.k.a. 25hydroxyD. I have read that it is the most common deficiency – from 50% of the general population worldwide, up to 95% of the older population. (By the way, request your own copy of any test.)

[oyster]

Hi Lynda, thanks for getting back to me. I actually found I have insufficient vitamin d- I have 26 (forgot units) with optimal reference range 30-80, 20-29 insufficient, <20 deficient. All other electrolytes measured on the complete metabolic panel were within normal limits. When I read about vitamin D, none of my symptoms seem to be resulting from a deficiency. Is there anything else you think it could be, based off my symptoms? Thank you again.

[kw202]

Hi Lynda, thanks for getting back to me. I actually found I have insufficient vitamin d- I have 26 (forgot units) with optimal reference range 30-80, 20-29 insufficient, <20 deficient. All other electrolytes measured on the complete metabolic panel were within normal limits. When I read about vitamin D, none of my symptoms seem to be resulting from a deficiency. Is there anything else you think it could be, based off my symptoms? Thank you again.

I'm no expert and Lyndacarol can probably point you in better directions than me, but the short answer is there are many, many other conditions/diseases/viruses that can mimic MS. One of the chief among them is a B12 deficiency which you say you don't have (what is your exact level? Don't go for just letting your doctor say your range is "normal" - ask for the test numbers and copies yourself). There are also some viral/bacterial agents such as Lyme Disease that can mimic MS, and others.

I've read it here enough in the short time I've been here at TIMS and you probably will too if you stick around - there is no one test for MS. Not even MRIs are conclusive. MS a diagnosis of exclusion of other diseases and conditions, plus all your other testing evidence. You need a thorough screening to rule out all these items before you can be sure what you have is MS.

Your vitamin D is definitely below where it should be, even if you don't have MS. And if you do, it's critical that you boost your levels quickly -- the therapeutic dose for MS is somewhere around 80-90 ng/ml. (It's likely, especially if you're in the U.S., that your scale here is ng/ml). When I was first going through MS testing, what seems like eons ago but really was less than two months ago, my vitamin D level came back at a very low 9.9 ng/ml. I took a mega-dose of 400,000 IU of D3 -- yes, all at once -- and began to supplement it with 10,000 IU of D3 daily. About two weeks later, it was up to 33.3 ng/ml. Better, but still not close. So, I took a dose of 50,000 IU/day for 10 days, then dropped back to 10,000 IU/day for about a week. My levels were retested lat week and I'm curious to see where that will have landed me.

I mention this only so you can help get a benchmark for how much you may want to supplement to raise your levels quickly. One word of caution, I am quite oversight and Vitamin D is fat-soluble, so you may not need as much D3 as I do to ensure your levels get to and stay at where they should be.

One more note. If you decide to supplement vitamin D (and I hope you do with that low level) then make sure you're buying D3, not D2. D3 is more easily absorbed, and if it doesn't say on the front, it'll say on the supplement facts "Vitamin D as cholecalciferol"). If you do decide to start taking large doses, you should also consider taking at least 400-600 mg/day of magnesium, and some K2 to ensure your calcium stays in your bones where it should stay.

Take a deep breath. Right now what you need is more information, which you should have once you see your neuro.

[oyster]

wow, kw, thank you for such a thorough reply. you definitely went out of your way and really relieved some of my fears.
i actually do have an electronic copy of my results. my b12 is 427 pg/mL. just have to sit back and not catastrophize until the 19th when i'll hopefully get some more info.


Test Name Result Flag(s) Reference Range Reported Date Footnote
TSH 1.1 0.3-4.7 mcIU/mL 1/5/2016 8:21 AM UMC
03714 - VITAMIN B12
Order Comment:
1 LAV + 3 GOLD W/FOIL


Test Name Result Flag(s) Reference Range Reported Date Footnote
Vitamin B12 427 254-1060 pg/mL 1/5/2016 8:23 AM UMC

Test Name Result Flag(s) Reference Range Reported Date Footnote
Absolute Nucleated RBC Count 0.0 0.0-0.0 X10e3/Ul 1/5/2016 11:30 AM UMC
Basophil Percent, Auto 1.3 % 1/5/2016 11:30 AM UMC
Percent reference range not reported per accrediting agency
Eosinophil Percent, Auto 0.9 % 1/5/2016 11:30 AM UMC
Percent reference range not reported per accrediting agency
Lymphocyte Percent, Auto 39.2 % 1/5/2016 11:30 AM UMC
Percent reference range not reported per accrediting agency
Monocyte Percent, Auto 9.8 % 1/5/2016 11:30 AM UMC
Percent reference range not reported per accrediting agency
Mean Platelet Volume 11.6 9.3-13.0 fL 1/5/2016 11:30 AM UMC
Neutrophil Percent, Auto 48.8 % 1/5/2016 11:30 AM UMC
Percent reference range not reported per accrediting agency
Nucleated RBC%, automated 0.0 % 1/5/2016 11:30 AM UMC
Percent reference range not reported per accrediting agency
Absolute Baso Count 0.1 0.0-0.1 x10E3/uL 1/5/2016 11:30 AM UMC
Absolute Eos Count 0.1 0.0-0.5 x10E3/uL 1/5/2016 11:30 AM UMC
Absolute Lymphocyte Count 2.5 1.3-3.4 x10E3/uL 1/5/2016 11:30 AM UMC
Absolute Mono Count 0.6 0.2-0.8 x10E3/uL 1/5/2016 11:30 AM UMC
Absolute Neut Count 3.1 1.8-6.9 x10E3/uL 1/5/2016 11:30 AM UMC
Mean Corpuscular Hemoglobin 32.2 26.4-33.4 pg 1/5/2016 11:30 AM UMC
MCH Concentration 33.3 31.5-35.5 g/dL 1/5/2016 11:30 AM UMC
Mean Corpuscular Volume 96.7 79.3-98.6 fL 1/5/2016 11:30 AM UMC
Platelet Count, Auto 230 143-398 x10E3/uL 1/5/2016 11:30 AM UMC
Red Blood Cell Count 4.19 3.96-5.09 x10E6/uL 1/5/2016 11:30 AM UMC
Red Cell Distribution Width-CV 12.4 11.1-15.5 % 1/5/2016 11:30 AM UMC
Red Cell Distribution Width-SD 43.8 36.9-48.3 fL 1/5/2016 11:30 AM UMC
White Blood Cell Count 6.35 4.16-9.95 x10E3/uL 1/5/2016 11:30 AM UMC
Hemoglobin 13.5 11.6-15.2 g/dL 1/5/2016 11:30 AM UMC
HCT 40.5 34.9-45.2 % 1/5/2016 11:30 AM UMC


03460 - TSH
Order Comment:
1 LAV + 3 GOLD W/FOIL

Test Name Result Flag(s) Reference Range Reported Date Footnote
TSH 1.1 0.3-4.7 mcIU/mL 1/5/2016 8:21 AM UMC


03714 - VITAMIN B12
Order Comment:
1 LAV + 3 GOLD W/FOIL

Test Name Result Flag(s) Reference Range Reported Date Footnote
Vitamin B12 427 254-1060 pg/mL 1/5/2016 8:23 AM UMC


03934 - VITAMIN D25 OH
Order Comment:
1 LAV + 3 GOLD W/FOIL

Test Name Result Flag(s) Reference Range Reported Date Footnote
Vitamin D,25-Hydroxy 26 L 30-80 ng/mL 1/6/2016 8:30 AM UMC
Deficiency: Less than 20 ng/mL
Insufficiency: 20 - 29 ng/mL
Optimum Level: 30 - 80 ng/mL

This test measures both 25-hydroxy vitamin D2 and D3.


80053MC - COMPREHENSIVE METABOLIC PANEL

Test Name Result Flag(s) Reference Range Reported Date Footnote
Glomerular Filtration Rate ... 1/5/2016 11:30 AM UMC
Alkaline Phosphatase 52 37-113 U/L 1/5/2016 11:30 AM UMC
Bilirubin,Total 0.4 0.1-1.2 mg/dL 1/5/2016 11:30 AM UMC
GFR Additional Information Reference Intervals 1/5/2016 11:30 AM UMC
GFR >89 Normal
GFR 60 - 89 Normal to mildly reduced
GFR 30 - 59 Moderately reduced
GFR 15 - 29 Severely reduced
GFR <15 Kidney failure
Results are in mL/min/1.73 square meters. The estimate
assumes a steady-state and is most accurate for GFRs <60
mL/min/1.73 square meters. Patients who are >59 years old
can have mildly reduced GFR due to aging.
AST (SGOT) 28 13-47 U/L 1/5/2016 11:30 AM UMC
Creatinine 0.8 0.6-1.3 mg/dL 1/5/2016 11:30 AM UMC
Total Protein 6.6 6.1-8.0 g/dL 1/5/2016 11:30 AM UMC
GFR Est.for Non-African Americ 87 1/5/2016 11:30 AM UMC
ALT 30 8-64 U/L 1/5/2016 11:30 AM UMC
GFR Est.for African American 89 1/5/2016 11:30 AM UMC
Albumin 4.5 3.9-5.0 g/dL 1/5/2016 11:30 AM UMC
GFR Estimate NP 1/5/2016 11:30 AM UMC
Calcium 9.1 8.6-10.3 mg/dL 1/5/2016 11:30 AM UMC
Chloride 104 96-106 mmol/L 1/5/2016 11:30 AM UMC
Total CO2 28 20-30 mmol/L 1/5/2016 11:30 AM UMC
GLUCOSE 76 65-99 mg/dL 1/5/2016 11:30 AM UMC
Potassium 4.1 3.6-5.3 mmol/L 1/5/2016 11:30 AM UMC
Sodium 142 135-146 mmol/L 1/5/2016 11:30 AM UMC
Urea Nitrogen 14 7-22 mg/dL 1/5/2016 11:30 AM UMC

[lyndacarol]

I second the post from kw202.

Let me just add that many experts think that the reference ranges for B12 are set too low in the US (usually the cutoff below which is deficiency is about 200 pg/mL). In Japan, a test result below 500 pg/mL is considered a deficiency. So… a US doctor will say that your B12 level of 427 pg/mL is "normal," but a doctor in Japan will treat it as a deficiency.

Since B12 is a water-soluble vitamin (any excess that your body does not use is flushed out in urine), is not toxic, and is inexpensive, it will not hurt you. Discuss with your doctor the possibility of taking daily sublingual tablets of methylcobalamin (NOT cyanocobalamin, which must be decyanated by the body first before it can be used). B12 injections given in doctors' offices in the US are this cheaper, less easily absorbed cyano form.

Your MCV (Mean Corpuscular Volume) value at 96.7 fL is at the high-end of the reference range (79.3-98.6). This indicates that you have enlarged red blood cells (a.k.a. macrocytosis), which can be a sign of long-term vitamin B12 deficiency (There are other causes for this condition as well.).

It would be helpful if your neuro would order the red blood cell (RBC) folate test AND the serum homocysteine test AND the methylmalonic acid test. These three additional tests will give a clearer picture of your B12 status.

As kw stated, your vitamin D is definitely low. There has been much research linking low vitamin D levels to MS. This is definitely another topic to pursue with your doctor.

Again, I second kw's advice, "Take a deep breath."

[oyster]

Wow, incredible. I'm impressed by how well you know these values. I just had my blood drawn for magnesium this morning and as soon as I get my neuro appt I'll ask my GP about these tests. Thank you SO much. If you're curious I'll keep you guys posted.

[lyndacarol]

If you're curious I'll keep you guys posted.

Many of us are interested in nutrient testing results – please share yours if you are willing.

In addition to vitamin B12 and vitamin D3, iron (ferritin), magnesium, and zinc are recommended for testing by jimmylegs, our resident expert in nutrition. She has educated us that these nutrients are frequently low or low normal (not at all optimal) in people with MS. I'm sure that jimmylegs would be especially interested in your magnesium level.

[jimmylegs]

hi oyster, more ditto re the above.. as always, min 500 pg/ml b12, target 40ng/ml serum d3 (more only if mineral status is monitored/optimal). LC is correct re mag comment, i am specifically curious if they will be testing serum mg, rbc mg, or both? note if you follow up on those dose recommendations for mag, just watch the supplemental form they are NOT all created equal. 600mg of mag oxide will send you to the toilet in short order. mag glycinate is what you need; do your research and be sure of your supplier before driving all over the world note also that it is absolutely possible to take too much supplemental magnesium. i have spent years building myself back up and at this stage can't tolerate more than 100mg mag glycinate per day without feeling too sluggish in the large muscles. if blood shows low to mid normal range, work with mag rich foods first then ramp up slowly on the supplemental side, 100mg per day for a couple days, then another 100mg per day, back off if and when you not any undesirable side effects. HTH

[oyster]

Wow, thank you all so much, and thanks for the tips, jimmylegs. I'll make sure to keep you guys posted.

[jimmylegs]

no probs so did you happen to know which kind(s) of mag test they are running?

[oyster]

all i know is that the sticker on the vial said serum magnesium.

[jimmylegs]

good to know, that'll work

[oyster]

Magnesium was 1.4, reference range  1.4-1.9    mEq/L. still waiting on the folate RBCs, MMA, etc.

[jimmylegs]

hey there, great update!

just as an fyi, the first time my own level for a blood test came in as the lowest ever, it moved the bottom end of the lab's range to match my data. from then on, anyone with a level higher than that would end up 'normal'. in that case it was a serum zinc level, but you can imagine such a problem not being reserved for one kind of test. i would be interested to know if the bottom end of your lab's range was 1.4 yesterday, or something higher! (esp given that a more widely published 'normal' would be 1.5–2.5 mEq/L).

now for conversions.

Normal range: 0.7–1 mmol/L (1.5–2 mEq/L; 1.7–2.4 mg/dL). http://emedicine.medscape.com/article/2088140-overview

my lab's normal is 0.7-1.1 mmol/l, i've seen .65-1.05 mmol/l locally as well.

the link above gives 'critical value' as 1.0 mEq/L, however based on studies of serum levels in healthy controls, folks are better off well into the upper half of these normal ranges, ie well above 0.9 mmol/L, or above 1.75-2 mEq/L (depending which 'normal' source you're reading), or at least 2.05 mg/dL. i have routinely aimed and advocated higher, since we are essentially talking about a different set of lower cut-offs within the wider so-called 'normal' ranges.

so, couldn't hurt to top that 1.4 up!

going forward, what is your current daily mag intake from food sources? which are your preferred dietary sources of mag? do you know if you are meeting recommended minimum daily intake amounts? are you on groundwater, or city tap? do you drink bottled water and if so, what kind? are you on any of the known mag-depleting meds at all? all relevant questions given this result. if you don't know the answers and would like to, just say and i'll point you in the direction of some of my fave info resources