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Hi there, I meant to post this question a few days ago, but the registration process stalled for some reason. My question is this, what labs or would you have your general practitioner look at -before- going to a neurologist for further workup? I would honestly like to rule out MS, but I want to hit the basics before spending a bunch of money.

I have a long, dull story of flare ups that will resolve after a few weeks leaving some residual problems and then it comes back after a few months. I was diagnosed by cardio as having "dysautonomia" due to one positive tilt table test. This was last fall. I have had repeated issues trying to get into see someone due to a variety of reasons. Cardio refused to see me again, Urgent Care said that they could not help and the doctors that Cardio referred me to cannot see me anytime soon- this includes the Mayo Clinic, who says that I need to exhaust my local resources first. I made an emergency appointment with the gp and that morning most of my s/s resolved, so I canceled.

So I have been doing my own research, and I have come to the conclusion that I may have Autonomic Neruopathy versus Dysautonomia (which is a form of Autonomic Neuropathy I believe). During the flare ups of whatever I am suffering with, I have had problems with my face, eyes and movements, especially on the left side of my body. This is in addition to the s/s that I believe are associated with the AN; urinary retention, gastroparesis, bradycardia, hypotension, dizziness, my face does not sweat, heat intolerance, left pupil smaller than the right, etc... However, I do not seem to have the orthostatic hypotension and tachycardia that POTS and other forms of Dysautonomia have. I very well could be wrong, but who knows?

LMH wrote:My question is this, what labs or would you have your general practitioner look at -before- going to a neurologist for further workup? I would honestly like to rule out MS, but I want to hit the basics before spending a bunch of money.

Welcome to ThisIsMS, LMH.

It is my opinion that your GP should order the vitamin D blood test called "25-hydroxy D" for you. Vitamin D deficiency is very common today – over 1/2 of the American population is estimated to be deficient. Vitamin D deficiency can lead to ANY kind of symptom in ANY system of the body – cardiovascular, digestive, immune, nervous system, and all the others.

This vitamin D test is inexpensive (probably less than $70), is a simple blood test, and could give important information. Ask for your own copy of the test results so that you have the actual numbers.

Hi LMH,
Welcome to ThisIsMS. In addition to a vitamin D3 test, a test for vitamin B12 deficiency is critical as a B12 deficiency can mimic MS in many ways. A full B12 assay includes B12, homocysteine, methylmalonic acid and red blood cell folate. Please see the following discussion topic for more information. http://www.thisisms.com/forum/natural-a ... 24857.html Moreover, there is some disagreement over what a normal value for B12 is. Many laboratory ranges go from about 200 to 800 pg/mL. However, for anyone experiencing neurological symptoms, you'll want B12 to be 500 to 1000 pg/mL.

Well, I did get a referral to neuro anf another cardiologist for the dysautonomia. The doc pretty much blew me off. I had a timeline of my symptomatic "flares" over the last year to be chronological, but he accused me of going off on a tangent and that he could only deal with so many problems in one visit. He basically said it was anxiety with a bare minimum physical assessment.

Is it possible to submit my chronological chain of exacerbations to my medical record? If so, does the MD have to approve? I am thinking of going back and having them include it for the referals to the specialists. My issue is that these exacerbations are getting worse as time goes on and I would like to be taken a little more seriously.

Btw- He only approved a CBC and Chem 14, though he was reluctant to do so. "We dont normally test for vitamins and minerals"...

one day docs will remember that hippocratic oath they took and stop forgetting to account for the primary contribution of basic nutrition to public health.
til then you can take matters into your own hands for nutrient testing. d3 and b12 are a start.
usually it costs time and money. costs via private labs vary. access to online ordering varies. where i am, i have a doc that will agree to writing my test requisitions. if she said no i would go to a naturopathic doctor, ask for the requisition, ignore the hard sell on products for sale and regular in-office b12 injections, pay for the ND's time, go to the lab, and pay for each test. online requisitions are coming, but the company is pricey unlike similar options available in the US.
one step cheaper, but more work for you, is evaluating your diet against recommended intakes of essential nutrients. you can start with one or two. the list does not stop at b12 and d3. your body is more complex than that! but you can keep things relatively simple to start.
the most widespread nutrient issue is iron status. others that have been gaining recognition include d3, magnesium and zinc. b12 is a classic differential dx item for ms; deficiency symptoms are very similar to ms. studies in certain populations have shown that both vegetarians and non vegetarians can be low normal or outright deficient in b12, depending on day to day dietary choices. it's the same with all essential nutrients. if you are at all interested in pursuing testing or exploring resources for evaluating your day to day routine [ie food fluid meds etc] and its potential influence on your health, i can post a couple of key links for your info.

LMH wrote:Well, I did get a referral to neuro anf another cardiologist for the dysautonomia. The doc pretty much blew me off. I had a timeline of my symptomatic "flares" over the last year to be chronological, but he accused me of going off on a tangent and that he could only deal with so many problems in one visit. He basically said it was anxiety with a bare minimum physical assessment.

Is it possible to submit my chronological chain of exacerbations to my medical record? If so, does the MD have to approve? I am thinking of going back and having them include it for the referals to the specialists. My issue is that these exacerbations are getting worse as time goes on and I would like to be taken a little more seriously.

Btw- He only approved a CBC and Chem 14, though he was reluctant to do so. "We dont normally test for vitamins and minerals"...

If your doctor is uncooperative with ordering nutrient testing, you might consider getting testing independent of his involvement. (Some local labs will do testing for you – call and ask: "Nothing ventured, nothing gained.")

RequestATest, "National Leader in Affordable Direct to Consumer Lab Testing"
Vitamin D, 25-Hydroxy Blood Test: $59
http://requestatest.com/vitamin-d-25-hydroxy-testing


It is possible to order a 1-time vitamin D test kit from GrassrootsHealth for a $65 fee (+ $5 shipping). This at-home test requires pricking a finger, placing a few drops of blood on the blood spot card, and mailing it in (you get results within a week). My first vitamin D blood test done through GrassrootsHealth found my level was 24 ng/mL, frankly deficient. I highly recommend GrassrootsHealth.
https://www.grassrootshealth.net/proj-welcome/?pr=95284

How to Complete Your Home Vitamin D Blood Spot Test (5 min.)
VitaminDaction Project by GrassrootsHealth


Thanks to NHE, who posted this information some months ago, there is the option of ordering your own nutrient tests:

How to Order Your Own Tests for Nutrient Levels
http://www.peoplespharmacy.com/2016/03/ ... nt-levels/

First paragraph: "Do you know your vitamin D status? What about vitamin B12? It can be difficult to discern what your nutrient levels are unless you have the results from a laboratory test."
…
"A. Many states now permit people to order their own laboratory tests to determine nutrient levels as well as thyroid panels and other data. Some of the companies to look for include AnyLabTestNow.com, HealthTestingCenters.com, HealthCheckUSA.com, Life Extension, SpectraCell Laboratories and WellnessFX.com."

https://www.anylabtestnow.com/tests/micronutrient-test/

http://www.healthtestingcenters.com/

http://www.healthcheckusa.com/

http://www.lifeextension.com/Vitamins-S ... Blood-Test

http://www.spectracell.com/patients/pat ... t-testing/

https://www.wellnessfx.com/
https://www.wellnessfx.com/how-it-works

LMH wrote:Is it possible to submit my chronological chain of exacerbations to my medical record? If so, does the MD have to approve? I am thinking of going back and having them include it for the referals to the specialists. My issue is that these exacerbations are getting worse as time goes on and I would like to be taken a little more seriously.

It is my understanding that anything you send to your doctor's office is put into your medical records. I think this is part of the office procedure, and it does not require the doctor's approval or permit him to interfere with the procedure.

I certainly would encourage you to submit your information (handing it to the office staff in-person, if convenient; or sending by mail, at the very least). A complete record could be very important.

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.
(@25:50 in Pacholok 52-minute documentary, the statement appears on the screen: It is medically negligent not to rule out B12 malabsorption in symptomatic patients.)
Diagnosing & Treating Vitamin B-12 Deficiency: (52 min. video)

By the way, ANY doctor (even the neuro or cardiologist) can order the nutrient tests. Ask them.

jimmylegs wrote:one day docs will remember that hippocratic oath they took and stop forgetting to account for the primary contribution of basic nutrition to public health.
til then you can take matters into your own hands for nutrient testing. d3 and b12 are a start.
usually it costs time and money. costs via private labs vary. access to online ordering varies. where i am, i have a doc that will agree to writing my test requisitions. if she said no i would go to a naturopathic doctor, ask for the requisition, ignore the hard sell on products for sale and regular in-office b12 injections, pay for the ND's time, go to the lab, and pay for each test. online requisitions are coming, but the company is pricey unlike similar options available in the US.
one step cheaper, but more work for you, is evaluating your diet against recommended intakes of essential nutrients. you can start with one or two. the list does not stop at b12 and d3. your body is more complex than that! but you can keep things relatively simple to start.
the most widespread nutrient issue is iron status. others that have been gaining recognition include d3, magnesium and zinc. b12 is a classic differential dx item for ms; deficiency symptoms are very similar to ms. studies in certain populations have shown that both vegetarians and non vegetarians can be low normal or outright deficient in b12, depending on day to day dietary choices. it's the same with all essential nutrients. if you are at all interested in pursuing testing or exploring resources for evaluating your day to day routine [ie food fluid meds etc] and its potential influence on your health, i can post a couple of key links for your info.

Jimmylegs do you have a list of the supplements as their chemical names? One persons calcium is anothers calcium citrate, carbonate, etc...

hi not in a ready link but i can jot down a few notes not super technical or anything.

as usual i prefer to emphasize elemental nutrient requirements, and their delivery from whole food sources, first.

after that, once you're into the supplements for topping up purposes, my interest in form varies depending on the nutrient in question.

on the whole i prefer to buy something higher quality, but have overdone it on the spending front a few times, with no particular added benefit (and sometimes got some unpleasantness as the extra bang for the buck; thaaannnks )

vit a, whatever. i like to mix up animal (retinol) and veg RAE (ie beta carotene etc) sources.
vit B complex, mostly whatever except for b12. i prefer methylcobalamin for that one.
vit C, something ascorbate, before ascorbic acid. are we guinea pigs? no. but: http://bit.ly/2q94MQW
i recently got scammed by something called c8. didn't read it carefully and after the fact saw it was full of nonsense i don't actually want to be part of the market for, at all. i am working my way through the bottle, begrudgingly.
vit D, obviously d3 before d2. same reasons as above for B and C - bioavailability. i learned recently that you can get vitamin D4 (!) from mushrooms, after exposure to uv light.
vit E has to be E8 complex. ideally natural source, natural ratio, blend of 4 tocopherols and 4 tocotrienols.
vit K for sure those (k1, k2) come to me via whole foods. i'm all about my green leafy cruciferous veg for k1 and sparingly, cheese, butter, eggs, chicken etc for k2. today is a k1 kind of day for sure.
calcium i have not been taking. i think i am getting a good chunk of the way there via routine emphasis on dark leafy greens.
magnesium, i prefer glycinate. i bought a mixed magnesium product because i'm a fan of the brand but on closer inspection i am not sure it was worth what i paid - more than double what i would normally shell out for one bottle of magnesium.
iron, a mix of heme (animal) and non-heme (veg) sources. all, esp veg, best combined with a rich source of vit c, like red pepper, to enhance absorption. it's been a while since i looked into it but i thing ferrous forms are better than ferric.
potassium supplements i've seen are kind of nonsense, for off the shelf at least. 99mg? yeah i'll take 50 per day ok.. even over the counter most i've seen was 600mg. so 8 of those?! i like food lol.
selenium, eggs and brazil nuts. i am not as good at taking my brazil nut supplement as i should be :S right now am working through a selenium supplement i didn't choose personally. it's not the latest one ive been in the habit of looking for: selenomethionine. that said i think i read about something even *better* so next time i need more selenium, will investigate..
zinc, again after emphasizing zinc rich foods, beyond that i usually buy zinc citrate blended with a little copper. in the ratio 50:2.
across the board i go for gelcaps or powder caps if i can get them.
i think that is that for now

ps yea that c8 deal is about 6 essential minerals, each x ascorbate. some palmitate thing i don't know about, and then they tack on synthetic ascorbic acid at the end of the list. then moar minerals. then a bunch of herbals. won't buy that one again i don't think. my freezer is half full of local strawberries anyway

jimmylegs wrote:ps yea that c8 deal is about 6 essential minerals, each x ascorbate. some palmitate thing i don't know about

That's probably ascorbyl palmitate. It's a vitamin C linked to the fatty acid palmitic acid. It makes vitamin C available to the lipid environments of the cell.