New symptom out of the blue

[NHE]

You might also want to consider asking them to test homocysteine and red blood cell folate as well. They're usually considered a standard part of a B12 analysis.

References:

"Everything You Want Your Doctor to Know about Vitamin B12"



"Could It Be B12? An epidemic of misdiagnoses" by Sally Pacholok and Jeffrey Stuart.
https://www.amazon.com/Could-Be-B12-Epi ... 884995691/

You may wish to read the following topic for more information about B12.
http://www.thisisms.com/forum/natural-a ... 24857.html

[LisaH]

Thanks, NHE. I'll certainly mention those to my doctor. I have another question that someone here might be able to answer. The neurologist added two diagnoses to the bottom of my blood work order. Do these mean "this is what we're looking for" or did the neurologist actually add these to my list of diagnoses? They are:

G60.9 (10) Hereditary and idiopathic neuropathy, unspecified
E56.9 (10) Vitamin deficiency, unspecified

I'm diagnosed at the neurologist with headache, migraine (unspecified), palatal myoclonus, occipital neuralgia, trigeminal neuralgia, and fasciculations.

[jimmylegs]

hopefully you can have the docs test all the ones listed and failing that at least ensure diet exceeds daily recommended intakes for each, for at least as long as you are on gabapentin.

per google:

G60.9 is a billable ICD (International Classification of Diseases) code used to specify a diagnosis of hereditary and idiopathic neuropathy, unspecified.
https://icd.codes/icd10cm/G609
E56.9 is a billable ICD (International Classification of Diseases) code used to specify a diagnosis of vitamin deficiency, unspecified
https://icd.codes/icd10cm/E569

*looks like* a solid 'we're stumped' dx right there. on board with it being a hereditary and idiopathic as well as a nutritional issue... which they can't nail down. might be an idea to zoom in on the so called 'normal' ranges and check out whether your levels are low 'normal' like all the sick ppl, or high 'normal' like all the folks that are well. for nutrients depleted by gabapentin as well as those known to be off in ms patients.

yes there can be excess with nutrients but it's not often the case. last example of that encountered was tims member zyklon's rather high serum ferritin. (2000, yes thousand, vs i like to aim for the 80-100 ballpark). much more often it's about tweaking a level from insufficient to optimal within the 'normal' range as currently defined.

[LisaH]

Thanks again for the info, jimmylegs. I have another question for you (and anyone else reading this). Did you fast before having a B12 test? I called the lab to find out if I needed to fast before my blood tests and was told that I didn't. She said I would need to if I was having lipids done (total cholesterol, HDL cholesterol, LDL cholesterol, triglycerides). She said, "just drink plenty of water". I just read on WebMD ( http://www.webmd.com/diet/vitamin-b12-15239#1 ) that you have to fast for 10-12 hours before a B12 test, but other sites don't say that. I assume that if fasting was a requirement before any of the tests ordered, my neurologist would've stated that in the order. Am I wrong? I'm concerned that I won't get an accurate result from my test(s) now.

[NHE]

Thanks again for the info, jimmylegs. I have another question for you (and anyone else reading this). Did you fast before having a B12 test? I called the lab to find out if I needed to fast before my blood tests and was told that I didn't. She said I would need to if I was having lipids done (total cholesterol, HDL cholesterol, LDL cholesterol, triglycerides). She said, "just drink plenty of water". I just read on WebMD ( http://www.webmd.com/diet/vitamin-b12-15239#1 ) that you have to fast for 10-12 hours before a B12 test, but other sites don't say that. I assume that if fasting was a requirement before any of the tests ordered, my neurologist would've stated that in the order. Am I wrong? I'm concerned that I won't get an accurate result from my test(s) now.

Stop taking any B12, folate and biotin for 2 or 3 days before your blood draw. Note that biotin is used in the assay for B12 and can interfere with the test skewing the results.

[NHE]

I have another question that someone here might be able to answer. The neurologist added two diagnoses to the bottom of my blood work order. Do these mean "this is what we're looking for" or did the neurologist actually add these to my list of diagnoses? They are:

G60.9 (10) Hereditary and idiopathic neuropathy, unspecified
E56.9 (10) Vitamin deficiency, unspecified

They look like insurance codes added so that your insurance company will pay for the tests.

[jimmylegs]

^what NHE said re billing for tests. was just coming on to add.

i always wash out before blood tests for nutrients, regardless of what the requisition ways. nothing after 8pm the night before, not even coffee in the morning before testing (esp if having serum uric acid tested - which i don't any more since i realized i could correct low levels consistent with ms by fixing low zinc levels also consistent w ms).

way back before dx, when i was still thin on science ed and still being ideological about veganism, i actually used to take b12 before my blood tests. hindsight says: idiot lol.

[LisaH]

It does seem that those were added for insurance billing. They have to give a reason for ordering the blood work and that's what my neurologist came up with. I spoke to the hospital lab again and they assured me that they never have anyone fast for a B12 test. I don't take any supplements at all so only what I ate for breakfast (a lean cuisine pizza) could have influenced the test. I'm anxious to find out if these tests will reveal anything.

[LisaH]

Well, most of my lab results are back. I got my results on my hospital patient portal because the results are released to me 2 days after being completed in their system. It looks like my electrolytes and thyroid results are within normal range. My vitamin B12 shows as 402 pcg/mL (ref. range 187 pcg/mL - 883 pcg/mL). I won't get the results of the Methylmalonic Acid test until tomorrow and that has to do with B12 as well. My Vitamin D,25 Hydroxy is 12.2 ng/mL (ref. range 30.0 ng/mL - 100.0 ng/mL) so that's obviously a deficiency. From what I've read, there's a connection between vitamin D and MS, but it isn't clear if low vitamin D is a cause of or a consequence of MS. My Segmented Neutrophils are 73.4 % (ref. range 35.0 % - 75.0 %) and my Lymphocytes are 16.5 % (ref. range 19.0 % - 48.0 %) and my Immature Granulocyte are 0.400 % (ref. range 0.000 % - 0.631 %). Even though I'm within normal range on the immature granulocytes, I read this when I was researching it: "With the exception of blood from neonates or pregnant women, the appearance of immature granulocytes in the peripheral blood indicates an early-stage response to infection, inflammation or other stimuli of the bone marrow." I'm not sure if I need to be concerned about those numbers or not. I'll be getting my ANA (antinuclear antibody) results this afternoon.

[jimmylegs]

hi
for about a decade i've used 500 pg/ml as the lower cutoff for serum b12. for myself i actually use 500 pmol/L, which converts to 677 pg/ml giving me a nice little buffer. when i was vegan my levels were undetectable :S
do consider all d3 cofactors carefully when working to correct deficiency. docs are not quite on this yet, but pushing just d3 into a less than healthy system can create problematic imbalances. for myself when trying to maintain levels up in the 60 ng/ml neighbourhood led to terrible magnesium deficit issues. this was even with daily magnesium supplementation. i was rescued from that dilemma by a helpful pharmacist.
did they run serum magnesium at all? any other d3 cofactors? any others from the constellation of nutrients known to be subpar in ms patients?
we already know that serum mag is positively correlated to serum d3. increase magnesium intake and serum response to d3 from diet and sunshine gets a boost.

[LisaH]

No, jimmylegs, there's no result for magnesium. What do you mean by "others from the constellation of nutrients known to be subpar in ms patients"? The neurologist shouldn't diagnose me as deficient in B12 since I'm within the reference range on that, though, right? What might the Methylmalonic Acid results show relating to my B12 that could indicate a B12 deficiency? If the vitamin B12 test shows that I'm normal, could that change because of the other test?

[NHE]

The neurologist shouldn't diagnose me as deficient in B12 since I'm within the reference range on that, though, right?

B12 at 402 pg/mL is not a bad number. It's certainly better than being at the lower end of the scale (especially with a range that down as low as 187 pg/mL). However, it's still not ideal. For anyone experiencing neurological symptoms, B12 should be 600-1000 pg/mL. Sally Pacholok, coauthor of "Could it Be B12? An epidemic of misdiagnoses," states the CNS can be deficient in B12 when serum levels fall below 500 g/mL.

What might the Methylmalonic Acid results show relating to my B12 that could indicate a B12 deficiency? If the vitamin B12 test shows that I'm normal, could that change because of the other test?

Methylmalonic acid, MMA, is thought to be a specific biomarker for B12 deficiency. If MMA is greater than 0.38 nmol/L, then it indicates that you have a deficiency in the adenosylcobalamin form of B12 (the form that's stored in the liver and utilized in the mitochondria). However, it's possible to have false negatives, i.e., actual B12 deficiency, but low MMA, if you've been on antibiotics recently or at the time of your blood draw for your MMA/B12 test. You can also be near the lower end of the range, but still be functionally deficient in B12 based on how your body processes B12.

Another biomarker for B12 deficiency is homocysteine, a cardiotoxic aminoacid. The normal range is 4-12 mmol/L and it can be elevated if B12 is functionally deficient. However, homocysteine can also be elevated in cases of low folate and/or low B6 so it's thought to be a less specific biomarker than elevated MMA. Did they test homocysteine and red blood cell folate?

[jimmylegs]

ok re no serum mag that is fairly typical, but still disappointing.

constellation - i refer to a group of nutrition problems which are overrepresented in ms patients. many suspect nutrients have their own topics in the 'natural approach' section of the forum.
subpar - for nutrients in that group, the levels in ms patients are lower in the normal range than the higher normal levels seen in healthy controls.
because patient levels are often not low enough to be flagged as outright 'deficient', the problems are missed. this is in spite of the fact that deficiency symptoms demonstrably occur within standard 'normal' ranges.

the use of the word 'normal' in bloodwork refers purely to the fact that the results seen in a group of people describe a bell curve. tails +/- 2 SD trimmed. so you basically are talking about the range of levels seen in 97% of the population informing that range. but what if a society of people living in food environments programmed for chronic (but not yet diagnosed) illness informs the normal range?

b12 is a great example of a problematic 'normal' range. the bottom end of the range is defined by the point at which the mean corpuscular volume increases measurably. never mind the other subclinical deficits (ones they haven't necessarily got tests for) that appear and increase on the way down to this basically arbitrary set point. so you're correct you won't be dxd with b12 deficiency based on your test result. even so, you may be manifesting b12 deficit issues that aren't associated with the volume of your blood cells. MMA test is one way to get around the deficiencies of the b12 normal range. levels rise as serum b12 drops. so to your question the test result would not change whether you were clinically b12 deficient, but it could enable the doc to see the problem with a level in the low normal range.

similar with serum d3. used to need levels high enough to prevent rickets. then science learns more, as as with MMA rising while b12 falls, PTH rises as d3 falls. now we know we need enough d3 to prevent elevated PTH with associated consequences for osteoporosis, osteomalacia, etc. which is where the 30 ng/ml lower cutoff at your lab comes from. https://www.ncbi.nlm.nih.gov/pubmed/27065162
ms patients are generally working to the research on vit d3 and the immune system. the lower cutoff for that is more like 40 ng/ml. highest mine has ever been was 109 ng/ml (i don't keep it there it was unintentional when it happened).

re MMA, Hcy or anything like that, this site is a great resource when learning about different tests. spent a lot of time there when first dxd: https://labtestsonline.org/understandin ... a/tab/test

clear as mud???

[LisaH]

The result for my Methylmalonic Acid is 0.17 mcmol/L ( ref. range 0.00-0.40), so that's seems fine. NHE, I haven't been on antibiotics lately. Also, I don't see any results for homocysteine or red blood cell folate. Yes, jimmylegs, clear as mud.

I'm relieved that there's no B12 deficiency. The neurologist and my other doctors would likely assume that to be the cause of all my symptoms and not investigate further. I'm anxious for them to contact me next week regarding the results. As far as they know, I don't have a clue at this point. A lot of patients wait to hear from a doctor instead of logging into their patient portal to read test results.

[jimmylegs]

just to re-emphasize, 'normal' vs 'deficient' is not a good way to think about these things. b12 should be a concern for anyone wishing to avoid commonalities with the typical ms patient. as b12 levels approach the lower end of the range risks for the following gradually increase:

http://www.aafp.org/afp/2003/0301/p979.html

TABLE 1
Clinical Manifestations of Vitamin B12 Deficiency
Hematologic
Megaloblastic anemia
Pancytopenia (leukopenia, thrombocytopenia)
Neurologic
Paresthesias
Peripheral neuropathy
Combined systems disease (demyelination of dorsal columns and corticospinal tract)
Psychiatric
Irritability, personality change
Mild memory impairment, dementia
Depression
Psychosis
Cardiovascular
Possible increased risk of myocardial infarction and stroke