Hit a brick wall...any help appreciated

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Hit a brick wall...any help appreciated

Postby jpaul3405 » Mon Jan 13, 2014 9:00 am

This is my first post on this site, but I am really at a loss.

I am a 34 year old working male with two young kids. Four months ago, I woke up with a strange uncomfortable sensation in my head. I can't describe it well, but the best I can do is that it is a combination of dizziness and light pressure in my head. It has been a constant from the moment I wake up until I go to bed although it ebbs and flows in intensity.

The last week or so, my right foot has frequently had a very minor tingle/vibration, although not constantly with me for an entire day. As of the last 3 days, I have also gotten a slight vibration that feels like it is on the outside of my right ear, which occurs for about 10/20 seconds several times during the day.

I have been tested for pretty much everything under the sun, including an MRI of brain and spine, LP, Evoked Potentials, and full blood work. Everything has been normal, including my neurological exam. No explanation of what is going on.

Could this still be from MS, given my age, or do you think MS is off the table? I really appreciate the time and help.

JP
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Re: Hit a brick wall...any help appreciated

Postby jimmylegs » Mon Jan 13, 2014 9:19 am

hi and welcome to the forum - sorry to hear you're having a rough time :( unfortunately sometimes it can take years for lesions to show up.

given the fact that we know lesions and symptoms are largely unconnected (brain lesions in particular), I personally find it odd that lesions still rank high on the requirements for diagnosis. but they do.

so, you can look at some of the things they don't cover in mainstream medicine. do you have a copy of the bloodwork that has been done already? if not, any chance you can get a copy for your own records? with non-mainstream approaches you do have to advocate for yourself, take things into your own hands a bit.

curious if they did any of the nutritional bloodwork? aside from a standard CBC? they may have included serum vit b12 (deficiency is a major differential dx for ms) and serum vit d3. those are a good start. there are probably a few more you could look at, and which are likely to provide some useful action items.

it's very hard to say if your collection of symptoms will eventually manifest as ms. but to be proactive, you can definitely do the work to rule out the common nutrients problems seen in the average ms patient. will help to see what you've had tested so far, and them perhaps we can come up with a couple more tests to run.

re everything being normal so far - for pretty much all the nutrients of concern, ms patients serum values are low- to mid- normal, while healthy controls serum values are high normal. so you have to dig a little deeper than 'normal' vs not.

again, welcome to the site!
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Re: Hit a brick wall...any help appreciated

Postby jpaul3405 » Mon Jan 13, 2014 2:49 pm

Jimmy, I really appreciate your taking the time to respond.

The following are the nutritional lab values that I am aware of:

- Vitamin B6 (24.6)
- Vitamin B12 (474)
- Folate (19.6)
- Iron (129)
- About six months prior to my symptoms, my Vitamin D was 18. I have been taking 50,000 units/wk, and a few weeks prior to my symptoms, my Vitamin D was 70, and my D3 was 16. As of last week, my total was 50 and my D3 was 9.8.

- I don't have values for Magnesium, Zinc or Copper.
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Re: Hit a brick wall...any help appreciated

Postby jimmylegs » Mon Jan 13, 2014 4:20 pm

hey again! I've been on the go today just logging in again now.

thanks for these numbers - great that you have them! I'm going to ask for more detail for most of these, if you can provide.

for b12, is that pg/mL? if so, aim for 500 MINIMUM. if it's pmol/L. then 370 is the minimum (but I aim for 500 pmol/L anyway)

for iron, that is usually the same units wherever you go and 129 looks ok but perhaps a smidge on the high side. *nowhere near* overload by any means so no worries on that score. just slightly elevated disease risk associated in research with levels in that neighbourhood. i'll have to track down that research again.

re your D3 result - is it:
serum 25(OH)vitaminD3 (aka serum 25hydroxyvitaminD3 ... units will be either ng/mL or nmol/L)
OR,
serum 1,25(OH)2vitaminD3 (aka serum 25dihydroxyvitaminD3 ... units will be either pg/mL or pmol/L)?

either way, all your D3 results are extremely low. the fact that your numbers are dropping over time in spite of supplementation suggests that you could have a problem with a cofactor.

any chance you could order a couple more tests? you already seem to know what I'm curious about ;) serum calcium wouldn't hurt either.

feel like sending me a 3-day food/fluid/meds/supplements diary, so I can check out your regimen for general nutrient density etc? could be some easy tweakables in there.
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Re: Hit a brick wall...any help appreciated

Postby jpaul3405 » Tue Jan 14, 2014 4:07 pm

I'll shoot you over a three day food diary and see if I can get an order for the other nutrient serum levels when possible. Below is what I can tell you now.

The B-12 value of 474 was measured in pg/ML.

The iron value of 129 was measured in ug/dL.

The TIBC was 270 ug/dL, and the Iron Sat was 48%.

D3 values have all been measured in ng/dL, including my last at 9.8.

My calcium was 9.9 mg/dL.

Thanks!
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Re: Hit a brick wall...any help appreciated

Postby jimmylegs » Tue Jan 14, 2014 5:45 pm

ok thanks for that :)

see if you can get your 25(OH)vitD3 level up into the 40-45 range.
until you have a sense of your magnesium and zinc status, it would be wise to use dietary measures only (eg herring, oysters, salmon, cod liver oil) to address your low vit D3.

i'll keep an eye open for your diet diary in the short term, and more levels when you can (ideally soon!)
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Re: Hit a brick wall...any help appreciated

Postby NHE » Wed Jan 15, 2014 12:59 am

jpaul3405 wrote:D3 values have all been measured in ng/dL, including my last at 9.8.

Are you sure those units are correct? D3 is usually measured in ng/mL.
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Re: Hit a brick wall...any help appreciated

Postby jpaul3405 » Wed Jan 15, 2014 6:25 am

My mistake...it was ng/mL
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Re: Hit a brick wall...any help appreciated

Postby NHE » Wed Jan 15, 2014 11:20 pm

jpaul3405 wrote:My mistake...it was ng/mL

OK. 9.8 ng/mL is very low. A good level is around 50-60 ng/mL. Don't forget to balance D3 intake with supporting minerals such as magnesium and calcium. I've also read that vitamin K, especially the K2 form, is helpful. Note that vitamin K1 is phylloquinone which comes from plants while the K2 form is called menaquinone which comes from bacterial fermentation. Foods such as natto or some cheeses are good sources of K2 or you can just get a K2 supplement.
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Re: Hit a brick wall...any help appreciated

Postby jimmylegs » Thu Jan 16, 2014 7:18 am

nb: according to research, ms risk decreases at levels over ~40 ng/mL (100 nmol/L). while you are working to get to that level, work hard on mineral balancing. esp. with any supplements.

I had a particularly rough time with magnesium (thought I was balancing and timing my intake just fine, but it can be pretty complex), and it went on for a couple years of NO FUN.

as I understand things, risk of hypercalcemia increases at serum 25-hydroxyvitD3 levels ~50 and higher. be careful with combining vit D and calcium supplements - hypercalcemia risk seems to be higher with excess calcium supplementation.

Dangerous nutrition? Calcium, vitamin D, and shark cartilage nutritional supplements and cancer-related hypercalcemia
http://my.clevelandclinic.org/Documents ... rition.pdf

I'm looking for studies that compare serum calcium and serum vit D *without* calcium supplementation being in the picture, but that isn't working out so far!

this study includes a table showing a drop-off in bone mineral density at serum vit D levels above 40 ng/mL or 100 nmol/L.

Estimation of optimal serum concentrations of 25-hydroxyvitamin D for multiple health outcomes
http://ajcn.nutrition.org/content/84/1/18.full

figure 1 Regression plot of difference in bone mineral density by 25-hydroxyvitamin D [25(OH)D] concentrations in younger (20–49 y; A) and older (≥50 y; B) adults after adjustment for sex, age, BMI, smoking, calcium intake, estrogen use, month of vitamin D measurement, and poverty income ratio. ...
http://ajcn.nutrition.org/content/84/1/ ... nsion.html
Image

I'd love to know what some of their other serum mineral levels were (zinc, mag?) and if that would influence BMD findings at higher vit D levels...
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Re: Hit a brick wall...any help appreciated

Postby NHE » Thu Jan 16, 2014 8:10 am

jimmylegs wrote:as I understand things, risk of hypercalcemia increases at serum 25-hydroxyvitD3 levels ~50 and higher. be careful with combining vit D and calcium supplements - hypercalcemia risk seems to be higher with excess calcium supplementation.

Many of your prior recommendations for vitamin D3 were for levels at 150 nmol/L. This is equal to 60 ng/mL. In addition, one of my family member's doctors stated that my family member's D3 at ~ 53 ng/mL was ideal confirming this target. Have you changed your recommendation?
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Re: Hit a brick wall...any help appreciated

Postby jimmylegs » Thu Jan 16, 2014 9:01 am

hi no i still think levels up to 150 nmol/L are fine, but only with *strict attention* to mineral status. i suspect that in the study above, the bone mineral density drops off due to poor cofactor status.

that's why i specifically commented
I'd love to know what some of their other serum mineral levels were (zinc, mag?) and if that would influence BMD findings at higher vit D levels...


over time i have gained the impression that the importance of cofactors is sadly underappreciated. i had the same problem myself, and the consequences sucked.

so with these posts and recommending a cautious 'phase 1' 40-45 target, I'm attempting to underline the importance of mineral balancing three times in red.

more debate on appreciating complexity vs simple vit D targets
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14805-495.html#p211024
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14805-510.html#p212536

re your family member, yes 53 is ideal when you consider vit D3 in isolation. would be interesting to compare this person's bone mineral density to the study above, and also their serum calcium, magnesium, and zinc levels to those seen in healthy controls.
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Re: Hit a brick wall...any help appreciated

Postby jpaul3405 » Fri Jan 17, 2014 8:39 am

Ok, I am going to try to get the blood work next week for the magnesium, etc. In the meantime, I private messaged you the diary. Thanks!
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Re: Hit a brick wall...any help appreciated

Postby jimmylegs » Sat Jan 18, 2014 9:51 am

sounds good! got your message, will review and reply :D I have an inbox full of diaries LOL
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Re: Hit a brick wall...any help appreciated

Postby jpaul3405 » Sat Jan 18, 2014 10:25 am

Take your time...no rush at all
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