The Waiting Game

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

The Waiting Game

Postby clarkycat » Sat Oct 07, 2017 7:29 am

Hi there. Like a lot of other people on this forum i'm playing the waiting game for my first MRI coming next month.

I'm a 33 y/o male, until recently a competitive distance runner and in pretty good shape. I've been trying to stay sane over the last year whilst a bunch of symptoms have piled up: extreme fatigue, shortness of breath / chest pain, headaches, blurry peripheral vision and double vision, balance issues and pain and weakness particularly on my right side (usually right lower back and into hips / right thigh). Also a complete lack of libedo.

Over the course of this year I've had a lot of blood tests (they really need a loyalty card for the blood lab, I'd be rolling in stamps by now) - exploring everything from iron, b12, testosterone (with a short bout of TRT because it was slightly low, which turned out to be a false flag) to H Pylori, Hepatitis B & C, HIV, West Nile, Lupus (and other autoimmune), Lyme...pretty much everything.

I started this year with an initial dx of Obstructive Sleep Apnea (despite not meeting any criteria for why I should have it) - but that sparked off using a CPAP machine for the first 3-4 months whilst I proved it was having no effect on my symptoms.

The Ophthalmologist pushed for the MRI - I just went to see them as I thought I needed glasses. Turns out my central vision is great but my peripheral is complete garbage.

I'm loathe to think I have MS, mainly because as I'm waiting for anything to give me a dx I would rather not jump to my own conclusions, particularly those on the more extreme end of the spectrum. I'm not a hypochondriac - or at least I hope i'm not (with only few tests pointing to possible dx I doubt myself a lot). But this has been a long process and reading the posts here draw a lot of similarities with what I've been going through.

As much as it sucks, it's good to find others that have been or are going through a similar journey.
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Re: The Waiting Game

Postby koneall » Sat Oct 07, 2017 9:01 am

I've been a distance runner for over 30 years. Months ago I had been having pain in my shoulder. Got worse the more I ran. Then developed vertigo and then vision problems. The MRI showed MS and ultrasound showed blood clots--thrombi--in my neck, shoulder and chest. With treatment the blood clots dissipated but there is still pain. The doc thinks it's from phlebitis. I've been on monthly tysabri infusions for the past 3 months. So far no more vertigo or vision problems. I'm hoping for the phlebitis to go away so I can get back to running. At my first trip to the neurologist she said I could be in a wheelchair in five years. I'm hoping that continued running will preclude that from happening.

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Re: The Waiting Game

Postby clarkycat » Sat Oct 07, 2017 9:13 am

Did you have any blood tests that presented regarding the inflammation re: c-reactive protein? We were exploring Vasculitis / Arteritis as one possibility, but no markers for inflammation so it's been dismissed.
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Re: The Waiting Game

Postby koneall » Sat Oct 07, 2017 9:43 am

They concentrated on the blood clot condition and ultimately found anti-phospholipid antibody syndrome. Often connected to Lupus but no lupus signs. So I have the tysabri infusion once a month for the MS and take pradaxa and propranolol daily for the clotting problems.

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Re: The Waiting Game

Postby jimmylegs » Sun Oct 08, 2017 11:34 am

hi cc and welcome :) curious if you have a sports nutritionist in place? if you know your specific daily micronutrient requirements over and above those given for average joe public, given your age gender weight and activity level (in combination with any other genetic, comorbid and/or diet/lifestyle factors possibly in play)? if so do you have a general strategy for meeting those essential daily requirements, and does it include any kind of multi over and above nutrient dense foods? do you have a system in place for monitoring your essential nutrient status over and above basic routine bloodwork? do you have a health care pro in place who can interpret serum nutrient results *within* the normal range, since deficiency is known to occur within the normal range for an array of essential nutrients? do you also happen to have serum ferritin, serum magnesium and serum zinc results on file? those numbers in particular would interest me given the list of symptoms you've described above. hope you can get some answers soon!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: The Waiting Game

Postby clarkycat » Wed Oct 11, 2017 11:10 am

Hi jimmylegs

I don't have a sports nutritionist in place unfortunately. Whilst I was training at the start of this process I've not been running in the past 2 months. Currently I see a personal trainer twice a week to maintain strength. I have largely been avoiding taking multi-vitamins until I nail down what the cause is - mainly I've avoided taking anything that would give credence to throwing a blood test result off.
However, I do have a history of those blood test results on file (missing zinc though):

Ferritin
March 2017: 80 ug/L

Magnesium
May 2017: 0.87 mmol/L

Calcium:
March 2017: 2.46 mmol/L

Vitamin B12:
March 2017: 195 pmol/L
May 2017: 427 pmol/L (after 2 months of taking B12 supplements to boost levels up, no change in symptoms so Dr said to stop)
August 2017: 195 pmol/L

1,25 Dihydroxy Vit D:
August 2017: 89 pmol/L

Mercury (Blood):
August 2017: 5 nmol/L

Lead (Blood)
August 2017: 0.05 umol/L
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Re: The Waiting Game

Postby jimmylegs » Wed Oct 11, 2017 7:58 pm

hi okay good info. ferritin looks ideal on the surface.

magnesium looks low - could aim for 1.0-1.1 mmol/l and see how you feel. calcium looks fine but when mag is on the low side, could potentially be problematic.

is there an obvious dietary reason for recalcitrant low b12? or is it worth considering looking at possible cofactor issues? if so i'd consider asking for that serum zinc test.

do you really only have serum 1,25 dihydroxy vitD3 and not 25 hydroxy vitD3? if not, consider asking for the latter. if your result actually is for serum 25 hydroxy vit d3 then your level is not awful but could certainly be better. improving magnesium status could potentially sort out slightly low d3 with no other intervention required.

i'm not used to seeing heavy metals results, good one! i looked up the reference ranges and at first glance your levels appear fine there.

now i'm just reading back over op and thought you might find this study interesting

https://www.ncbi.nlm.nih.gov/pubmed/26507751

especially
"Statistically significant, positive correlations were found for the relationships between Mg concentration and TT, TCh, LDL concentrations."

normally when i make wisecracks related to libido, it's zinc levels i'm suggesting the gents get up. this time, why not start things off with magnesium, see what happens.

if you're averse to supplements, magnesium dense food and fluid choices could be an interim option.
at the same time, if fixing a nutrient deficit alters your symptoms, don't you want the docs to know this and make their diagnostic assessments accordingly?

thinkin out loud :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: The Waiting Game

Postby NHE » Thu Oct 12, 2017 12:46 am

jimmylegs wrote:
clarkycat wrote:Vitamin B12:
March 2017: 195 pmol/L
May 2017: 427 pmol/L (after 2 months of taking B12 supplements to boost levels up, no change in symptoms so Dr said to stop)
August 2017: 195 pmol/L
is there an obvious dietary reason for recalcitrant low b12? or is it worth considering looking at possible cofactor issues? if so i'd consider asking for that serum zinc test.

B12 at 195 pmol/L coverts to 264 pg/mL. This is still on the low side. If you have neurological symptoms, then it's best to be at 500-1000 pg/mL (369-768 pmol/L). What form of B12 were you using, cyanocobalamin or methylcobalamin? Were you taking it along with a methylfolate supplement? Methylfolate and B12 work together so it's important to take both. Note that methylfolate is distinctly different from folic acid, the latter of which is a synthetic variant which is processed differently by the body.

See... Folate Metabolism and MTHFR: An Introduction
https://www.youtube.com/watch?v=Mwn7RjSx3zM

Did you have folate measured, preferably, red blood cell (RBC) folate? What about other B12 markers like homocysteine, methylmalonic acid (MMA), unsaturated B12 binding capacity and holotranscobalamin?
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Re: The Waiting Game

Postby clarkycat » Sun Oct 15, 2017 7:19 am

Hi NHE and Jimmylegs - sorry I have been out with stomach flu so couldn't get back to you. I'll cover each of your questions:

jimmylegs wrote:is there an obvious dietary reason for recalcitrant low b12? or is it worth considering looking at possible cofactor issues?


Nope - I'm not vegan, I eat plenty of meat and shouldn't have any problem getting enough B12. It was thought of as a possible diagnosis back in March (given my levels), hence why I spent 2 months trying to boost them up. We looked at possible causes for the low B12, but anything we could test for didn't work out (Anemia, Crohn's disease, coeliac, parasite / bacterial causes (looked at specific and general igG igA etc. levels)). Also saw a Gastroenterologist but they saw no reason to test me further.

jimmylegs wrote:do you really only have serum 1,25 dihydroxy vitD3 and not 25 hydroxy vitD3? if not, consider asking for the latter. if your result actually is for serum 25 hydroxy vit d3 then your level is not awful but could certainly be better. improving magnesium status could potentially sort out slightly low d3 with no other intervention required.


Yeah, the last round of tests my doc literally just went crazy and wrote down a billion tests. I'm really happy he's stuck this out with me and I can feel his frustration (and I'm glad he's not just giving up) - at the same time, it feels very much that he has no idea what's going on.
I can request the latter when I see him next. In the meantime, do you think it's worth improving Magnesium levels?

jimmylegs wrote:normally when i make wisecracks related to libido, it's zinc levels i'm suggesting the gents get up. this time, why not start things off with magnesium, see what happens.


I'm interested to see if I should try boosting my magnesium levels, or zinc, or both?

NHE wrote:B12 at 195 pmol/L coverts to 264 pg/mL. This is still on the low side. If you have neurological symptoms, then it's best to be at 500-1000 pg/mL (369-768 pmol/L). What form of B12 were you using, cyanocobalamin or methylcobalamin? Were you taking it along with a methylfolate supplement? Methylfolate and B12 work together so it's important to take both. Note that methylfolate is distinctly different from folic acid, the latter of which is a synthetic variant which is processed differently by the body.


I managed to get my levels up to 427 pmol/L in May by supplementing. I was taking B12 (Methylcobalamin) tablet each morning - I believe either 1000mcg or 500mcg (trying to find my specific notes on it, it definitely wasn't sublingual and it wasn't a timed release). I didn't start taking any methylfolate at the time.
After 2 months of supplementing I was retested and given my levels were in the midrange of "normal" and I was still symptomatic we decided to move on and try other things.

NHE wrote:Did you have folate measured, preferably, red blood cell (RBC) folate? What about other B12 markers like homocysteine, methylmalonic acid (MMA), unsaturated B12 binding capacity and holotranscobalamin?


Don't believe I've had my folate levels measured, or other B12 levels (I think the Dr was satisfied with just the existing B12 test and dismissed that as a cause after we had boosted my levels successfully with no change in symptoms).

However, given I'm very much in the mood to do something about it and regardless of the results of the MRI they won't start sorting anything out for me I'm willing to try supplementing.

I should add - the only other weird / abnormal results I've had at all were on my CBC.

Neutrophils:
September 2016: 6.26 x10e9/L
March 2017: 1.95 x10e9/L
August 2017: 2.34 x10e9/L

RDW:
September 2016: 11.4 %CV
March 2017: 11.6 %CV
August 2017: 11.3 %CV

Pretty much every other part of my CBC is Normal, though they're all at the extremities of the Normal range (i.e. RBC: 4.59 x10e12/L,
Hematocrit: 0.426 L/L, MPV: 9.5 fL etc.). I don't know if this is anything at all (I was looking at the Neutrophils value as backing up the B12 deficiency dx at the time) but it may be of use.

The question is now, should I try boosting B12 again? Should I boost magnesium or zinc or both? With magnesium and zinc, is there anything to be careful of with regards to toxicity? (I know B12 doesn't really have this problem)

Thanks for your help.
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Re: The Waiting Game

Postby jimmylegs » Sun Oct 15, 2017 10:20 am

optimizing magnesium and zinc would be good.

with magnesium care must be taken to choose the proper form. high density food sources are the best foundation. any supplements must be soluble/absorbable. my preference: magnesium glycinate (as distinct from magnesium BISglycinate which for some reason was too much for me). cheap forms like magnesium oxide are great laxatives. to put it mildly :S for daily intake, aim for 7-10mg per kg body weight. that will likely be somewhat higher than existing public health recommendations for your age/weight/gender.

interestingly, low zinc can affect your body's ability to utilize b12. anyone supplementing zinc should be aware of potential impacts on iron and copper status. zinc from dense food sources (eg a weekly serving of oysters) can help keep status topped up without causing an imbalance. where supplements are concerned, i always get a zinc product with copper built in (eg L-Opti Zinc at the moment). when using zinc supplements i have to stay on top of ferritin status. your ferritin looks fine based on the results you have handy. my levels have been both lower and higher than i like in the past, so i do keep an eye on it to some extent. lately i have been in the habit of going by feel. if i start waking up tired in the morning or yawning excessively through the day i'll start upping the red meat/spinach/kidney beans intake (veg sources always accompanied by red pepper for the vit C boost to non-heme iron bioavailabilty), and in a pinch, add a bit of liquid iron supplement as well (my multi contains no iron which is kind of a pain).

will be interesting to see serum zinc and or magnesium levels if you can get them, as well as results for a serum 25-hydroxy vitamin D3 test. i remember the first time i asked for a d3 test my doc went straight for 1,25dihydroxy and i had a time convincing both she and my ND that we were supposed to be testing 25(OH)vitd3. this was at least 10 yrs ago though - i'm surprised to see only 1,25(OH)2vitD3 in anyone's set of results nowadays!

Micronutrients (Magnesium, Zinc, and Copper): Are Mineral Supplements Needed for Athletes?
http://journals.humankinetics.com/doi/a ... n.5.s1.s74
Mineral elements, including magnesium, zinc, and copper, are required by the body in modest amounts for the maintenance of health and for the development of optimal physiological function. For athletes, adequate amounts of these minerals are required for physical training and performance. Studies of athletes during training, as compared to nontraining control subjects, indicate the potential for increased losses of minerals in sweat and urine. Some studies report suboptimal intakes of minerals, particularly among athletes who are actively attempting to lose weight to meet standards for competition. However, most athletes consume diets that provide adequate amounts of minerals to meet population standards. Athletes should be counseled to consume foods with high nutrient density rather than to rely on mineral supplements. General use of mineral supplements can alter physiological function and impair health.

luckily you've had a bit of extra info above re potential concerns associated w mineral supplement use. and you needn't use high levels forever. fix any problem that exists short term, tweak diet to meet daily needs via high density foods long term, monitor annually, ta da.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: The Waiting Game

Postby clarkycat » Sun Oct 15, 2017 12:04 pm

jimmylegs wrote:will be interesting to see serum zinc and or magnesium levels if you can get them


Hey jimmylegs, I posted my magnesium results earlier, no?

Magnesium:
May 2017: 0.87 mmol/L


So if I take this correctly:

- Boost magnesium and zinc with supplements
- DONT bother taking B12 supplements?
- Magnesium is looking like 504mg /day based on weight
- Zinc should be with copper added, RDA is 11mg /day
- Then once levels are sorted switch to balanced diet to maintain them

I can't find a Zinc supplement at my local drug store that has copper added though. Should I be good to just use one without Copper?
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Re: The Waiting Game

Postby jimmylegs » Sun Oct 15, 2017 1:32 pm

ah so you did i've been carrying on a bunch of different conversations - sry.

let's say: see if you can boost that mag up to the 1.0-1.1 mmol/l ballpark before next test.

yes in the short term you can use supplements to kick things into better shape then transition to micronutrient dense diet.

your b12 level is certainly less than ideal and it's an important one to deal with when ms is in the picture. when supplementing one thing doesn't work, it doesn't mean you don't need it but it could mean there's a co-factor issue. you might want to consider adding a high quality daily multi vitamin for active ppl - that will hit the b12 plus anything else that might be in short supply.

see if you can estimate daily mag intake from food and fluids, then add one or if needed a second magnesium glycinate powder capsule. if you do find you need more than one, add the second one at a different time of day than the first. this is my fave at present: http://orangenaturals.com/essential/mag ... g-60v-cap/
take any mag supplement before food, to help move it down into your small intestine where it is meant to be absorbed. i gave myself problems taking magnesium at bedtime right before lying down, which meant the powder capsule contents stayed in my stomach washing my LES in high concentrations of relaxant magnesium. let's just say it was a hellish year before i figured out what was going on and i don't wish the experience on anyone else.
i find when my dietary mag intake is high, i can't actually do two of those mag caps per day. it over relaxes my large muscles and i'll notice it climbing stairs.

zinc without copper is okay for the short term. best to have a serum level test done first (that one was missing, right?). when i first had zinc tested it was in the single digits and healthy control levels are in the high teens (in umol/l). doc said take 100mg zinc per day for one month. (that was gross by the way. lots of zinc at one time = nausea. must be taken with food to avoid that side effect). anyway the doc said nothing about copper when using zinc over that short a time frame. i've just learned about it since.

all that said, i think you should be able to find a zinc-copper option like this relatively locally if you decide to bother:
https://www.nowfoods.com/supplements/l- ... g-capsules
the daily upper limit for zinc is 40mg so it's safe for daily use if your test result suggests a boost is needed. the nausea thing may not be an issue at that level, esp if taken with food.

over the long term once levels are optimized, yes to maintenance via diet (eg for zinc, that weekly serving of oysters or what have you - nothing beats oysters though lol)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: The Waiting Game

Postby clarkycat » Sun Oct 22, 2017 7:43 am

So since last Monday I've started taking 50mg Zinc Citrate and 500mg Magnesium Bisglycinate, along with a pass of sorting out my nutrition in general. My activity level is pretty moderate at the moment so I don't feel I need to do anything extra. I'm continuing to document my symptoms daily, and paying extra attention to mood / neurological symptoms in case they change.

So far, inconclusive. I may be feeling more energetic but that could also be due to getting back to more regular running.

I plan to keep this up for a month and see if there's any conclusions I can draw from it.
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Re: The Waiting Game

Postby jimmylegs » Sun Oct 22, 2017 9:08 am

hi pls note that my magnesium issues described below were specifically with mag bisglycinate. i switched to magnesium glycinate.
either way, pls be sure to time supplemental intake around 15 mins before food, and do not take prior to lying down.

if mag is a serious issue for you, i would expect you to notice in matter of a couple of days (and if so, the matter may require attention for a long time)

re zinc, one month is should be an okay max trial duration, especially since you don't have serum zinc or copper levels on file yet.
good that your previous ferritin status looks fine going in. (mine doesn't - by feel anyway. am at risk for low ferritin, and last time i took zinc - ie within the last few days - i had to quickly take iron to compensate!)

along with diet set up to meet or exceed other essential nutrients, hopefully you'll see some benefit.
if you don't have adequate support for the dietary approach, could consider a high quality sports multivit/min to ensure adequate cofactors are going in.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: The Waiting Game

Postby clarkycat » Tue Nov 07, 2017 4:45 am

Finally had my first MRI (Multiplanar multiecho MRI of the brain without contrast) and got the results back. As expected there wasn't much to it:

A large trans medullary developmental venous anomaly is noted in the left frontal lobe which is a variant of normal venous drainage of the brain. There is no significant gliosis associated with this finding and there is no evidence of cavernous malformation.

The rest of the examination of the brain is unremarkable with no evidence of demyelination, space-occupying lesions, midline shift or hydrocephalous. There is no evidence of previous infarction or hemorrhage.


I'm meeting with my doc next Thursday to go over next steps. I see two possible options ahead - either we continue to pursue something on imaging (could a cavernoma associated with this DVA have been missed) or we try other approaches (my TSH is normal but maybe we can test my T3 / T4 levels now).

From a diagnosis standpoint I find myself coming back to the sleep apnea. Whilst I am not in any risk category for OSA and my ENT sees no reason I should have OSA, I have had multiple sleep studies and its not a test I can consciously affect. Therefore, can something else cause OSA beyond structural anomalies in jaw / neck, or can something appear as OSA but is in fact something else?
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