Seeking guidance—what testing should I have done?

[wobblyandcurious]

Hi folks,

I am about four years in to my medical mystery journey. I have been diagnosed with bilateral Meniere's Disease (2011), and I also have had periods of MS-like symptoms, with inactive lesions twice showing up on my brain MRI with contrast. I have had two spinal taps—the first was negative and the second (most recently, in November 2014) was inconclusive. Oligoclonal banding was present in my CSF and blood. My neurologist noted to me in Nov. that there is nothing "aggressive" going on in my body and has me continuing to do MRIs every 6 months for monitoring.

My reason for posting is that I am going to see a new PCP this week, and I would like to press for some additional bloodwork/referrals/testing that could either help me solve my mystery or at least help me make better decisions as I manage my disease/healing process at home. I am hopeful that this PCP will listen to me and act on some of my requests because he is a DO with a more holistic approach to disease and wellness.

My neurologist has definitely tested me for all the typical MS mimics, so I'm looking for anything beyond those, or anything that is worth retesting.

I currently follow the Paleo Autoimmune Protocol lifestyle. I've been eating this way for the past two months, so I'm still a newbie, but I'm finding a lot of benefits already. I work with a functional medicine practitioner on this front. So, I'm off all grains, gluten, dairy, soy, nightshades, alcohol, refined sugars, and something else I'm probably forgetting. Recently, my functional doctor discovered I am Vitamin D deficient, so she has been working with me on supplementing to bring those levels back up, as well as a supplement program focused on gut healing, which I actually feel great on.

Current symptoms:
* Tingling sensation in left leg and sometimes left hand
* Off-balance feeling/lightheadedness (improving)
* Heavy and/or missed heartbeats
* Hand tremors (worse on left side) (improving)
* Anxiety, emotional instability, fatigue (improving)
* Changes in menstrual cycle (delayed or arriving early by days)
* Back pain, especially in the morning after waking
* Headaches (improving)
* Light sensitivity
* Brain fog (improving)
* Vertigo (improving)

Past symptoms that are gone or reduced:
* Tinnitus (original attack was like a roaring in my head; now it's very very quiet)
* Buzzing in the base of spine when I put my head down (gone)

The only thing I definitely want to ask my new PCP for so far is a complete thyroid panel. What other tests should I request? If I can't get them through my PCP, I will try paying out of pocket for more testing through my functional med doc. Appreciate your input and guidance!

[jimmylegs]

if you can, i would see if you can get tests and your own copy of results for:

serum b vitamins (any available - i'll assume your docs have already tested b12 if they have ruled out ms mimics, and if so, do you have that result handy?)
serum 25(OH)vitamin d3
serum copper
serum ferritin
serum magnesium (RBC mag is not necessary)
serum zinc

if levels are consistent with those seen in ms patients, all results will be low normal and you'll know you can work to push them to the healthy upper level of the normal ranges. whatever the results are, seeing that wider nutrition picture is likely to provide some helpful action items for you going forward for any items that you can't get tests for you can monitor your dietary intake daily, and compare to published recommended daily intakes. re paying for testing, not sure how the prices are with your doc but it might be helpful to shop around with one or another of the online requisition provides like lef (life extension).

hope that helps

[lyndacarol]

wobblyandcurious, you can retrieve my private message to you by clicking on "new messages" in the upper left-hand corner of this page.

[wobblyandcurious]

Thank you both for your kind replies. Some of my blood results have started to come in. I wasn't able to convince this doctor to run all the tests I wanted. Of course, everything that was tested is coming back normal, so there's not really anything actionable at this point.

VITAMIN B12
VIT B12—866 (200-910 pg/mL)
Note: This is up from 779 when last tested in 2012.

CBC (COMPLETE BLOOD COUNT) (CBC NO DIFF)
WBC'S AUTO—4.8 (4.0-11.0 x1000/mcL)
RBC, AUTO—4.74 (4.20-5.40 Mill/mcL)
HGB—15.2 (12.0-16.0 g/dL)
HCT, AUTO—45.4 (37.0-47.0 %)
MCV—95.7 (81.0-99.0 fL)
MCH—32.0 (27.0-35.0 pg/cell)
MCHC—33.4 (32.0-37.0 g/dL)
RDW, BLOOD—13.3 (11.5-14.5 %)
PLATELETS, AUTOMATED COUNT—269 (130-400 x1000/mcL)

ELECTROLYTES, SERUM (ELECTROLYTE PANEL (NA, K, CL, CO2))
SODIUM—141 (135-145 mEq/L)
POTASSIUM—4.2 (3.5-5.0 mEq/L)
CHLORIDE—106 (101-111 mEq/L)
CO2—27 (21-31 mEq/L)

TSH (THYROID STIMULATING HORMONE) (TSH)
TSH—2.62 (0.35-4.00 mcIU/mL)

Jimmylegs, thank you for the tip about Life Extension lab testing. I didn't know about this resource. I will definitely keep that as an option for future testing, especially some of their vitamin and nutrient tests. I cannot seem to convince any practitioner (so far) that certain ones are worth testing. I see they also have the complete thyroid panel I've been pressing for, so I may just save up for that!

[jimmylegs]

yea, looks like pretty typical bloodwork, sadly uninformative re nutrients of concern for ms :S

may i ask what country are you in, wobbly? also, do you have your d3 results on file? may i ask how that has been addressed to date?

[wobblyandcurious]

I am in the U.S. Here are some results from blood work in January:

Vitamin D, 25-Hydroxy: 22 ng/mL (reference interval: 30–100)
Calcium, Serum: 9.7 mg/dL (8.7-10.2)
Iron, Serum: 50 ug/dL (35-155)
Cholesterol, Total: 119 mg/dL (100-199)
HDL Cholesterol: 51 mg/dL (>39) (Note: Functional doc wants to raise this.)
LDL Cholesterol Calc: 56 mg/dL (0–99)
T. Chol/HDL Ratio: 2.3

Here is something interesting: After my functional doc saw my low vitamin D levels, she put me on one of those typical 50,000 IU/week programs. I took the first mega dose this past Sunday, and my body immediately freaked out. My energy level went through the roof for a day with lots of panic and anxiety, and I began to have terrible gastrointestinal symptoms, which have been getting slowly better, but have kept me from work much of this week. I feel certain this is connected to the vitamin D—maybe not the D itself, but perhaps a sign of other deficiencies while my body tried to make use of the high-dose D? It's either that, or I coincidentally picked up a bug at the exact same time. Before the attempted mega-dose D, I had been taking about 6,000 IU daily since January of a liquid vitamin D, and did not have a problem. I actually felt pretty good. Thoughts?

Thanks for your time!

[jimmylegs]

ok good. just wanted to make sure i was pointing you at the right info for your location

re the results, ouch that vit d3 was bad for sure! if you can get it to at least 40 that would be a great start.

so 6000IU/d since january may have been having a slowly depleting effect on some of your body's stores of cofactors.. and then upping the dose to 50,000IU/wk could have been a bit of a last straw. panic and anxiety would be consistent with magnesium depletion.

low LDL cholesterol and low magnesium appear to be associated as well:

Magnesium status, serum HDL cholesterol, and apolipoprotein A-1 levels.
http://www.ncbi.nlm.nih.gov/pubmed/7608827

note also:

Overview of Vitamin D
http://www.ncbi.nlm.nih.gov/books/NBK56061/
"vitamin D3 (cholecalciferol) is synthesized in the skin of humans from 7-dehydrocholesterol" (which is a cholesterol precursor)

check out this table - when vit d3 is low, calcium is low too and magnesium is even lower:
http://www.jcdr.net/ReadXMLFile.aspx?id=3568#F1

the stats are cool too:
Parameter: Serum Magnesium with serum 25 (OH) Vitamin D3 levels
Pearson’s correlation coefficient: r= 0.92**
"If r =+.70 or higher, Very strong positive relationship"

just means there is a very strong likelihood of vit d3 being low when mag is low, and vice versa

so many interesting interconnections

[nellie]

Wobblylegs or Jimmylegs--Would you mind if I ask if wobblylegs is a female. I was comparing her test results for HGB & HCT and noticed the guidelines were different then what I was given. I am a female & told my HCT of 45.5 was high & HGB of 15.2 was high. She mentioned I might have polycythemia vera which was very concerning for me. I know male & female have different guidelines. Thanks.

[Scott1]

Hi,

I have no problem with Jimmylegs suggestions at all. Don't, however, forget to check for infections and the impact they have on the availability of amino acids. Check for EBV, chlamydias, mycoplasmas, lyme, babesia and borellia. Most can be cleared up or controlled. Check also your fasting amino acid levels against the normal range for the laboratory. Deficiencies are a sign of scavenging, not just diet. Also check your uric acid level. A low number implies something is awry for the metabolising of purines which should be rectified.
Regards,

[jimmylegs]

hi nellie sry i don't know if wobbly is female or male.

re high hgb, doesn't have to be polycythemia vera does it..? lots of possibilities.. were all these already ruled out in your case?
http://www.mayoclinic.org/symptoms/high ... m-20050862
what motivated the doc to think of pv?

when my uric acid was low (ms average or lower for years) i couldn't do anything food based to budge it for years. then i figured out i was zinc deficient, and then i figured out the zinc-ua connection, and then i started measuring blood zinc and ua together. strong positive correlation. when zinc went from 8.6 to 16.7, ua went from 188 to the 260s. relief!