This Is MS Multiple Sclerosis Knowledge & Support Community

Hey, I don't have anyone in my life that I can talk to about this, so I just wanted to put this out there.

The past few weeks I've been having some weird things happen.

Eyes - I just went to the eye doc for a yearly check up and he said I have double vision and some weak eye muscles used for focusing. I can tell that I have unusually blurry vision in my left eye. Sometimes (very infrequently) they also move back and forth really fast for a second before I can focus on something.

Muscles - twitching/spasms in my left eye/brow, right calf, and (left) forearm, also sharp, sharp pain in one of my intercostal muscles on on side of my chest, I couldn't breathe in or out without pain and it left me on the floor in tears. I've had this before, but usually taking one breath makes it go away. This time it just stayed for more than an hour, then subsided a bit, but still had pain for a couple days.

Tingling/numbness - after getting in a hot bath or after warming up running my feet (left on moreso than the right) have pins and needles. This hasn't happened until the last couple weeks. Also sometimes my left pinkie and ring finger on my hand feel a bit numb.

Tiredness - I started sleeping 10-11 hours a night and still feel tired. (I do run once a day though.)

In the past I've had a lump in my throat that I can feel while swallowing for weeks on end, thumping in my ear after hiccuping/sneezing, migraines (not so much anymore).

I lead a very active lifestyle (college athlete, running 60-80 miles a week) and take a lot of vitamins: 2,000 IU of D a day, vitamin C, B complex, Iron, magnesium, zinc, probiotic, and electrolytes. I also eat very well and tend not to eat a lot of processed or gluten-ful foods. I've had a lipid panel, metabolic panel, thyroid test, blood glucose, and B12 and they're all fine.

I'm not sure what I'm looking for here.. I guess I'm just trying to figure out if this is just normal stuff that runners would have or if it's just all in my head or what. I guess just an outside perspective would be nice. I can't afford to go to the doctor about it. The doctor would probably just think I'm crazy anyways. I feel crazy. Thanks for reading anyways.

"I can't afford to go to the doctor about it."

You can't afford NOT to go to the doctor. Most States offer free medical services for those that truly cannot afford them. Check out yours to find out what services are available to you.

hi and welcome sorry to hear you're dealing with all these symptoms. can you provide some more detail re the forms, amounts per pill, pills taken per day, and timing of pills taken through the day, so that we can assess intake levels, ratios, and interactions? also, can you tell us a little more detail about your day to day diet? if you can't afford to go to the doctor, you *can* do some work to evaluate whether you are actually getting all the nutrients you need given your active lifestyle. i am confident you'll be able to figure out some useful action items, with some digging

ps - a couple pages of posts with info and links, some of which you may find useful/informative: http://www.thisisms.com/forum/undiagnos ... 25652.html

Hi and welcome to ThisIsMS, suninthesky.

You have found new friends here that you can talk to about all these things that are happening to you. Since you write, "just an outside perspective would be nice," I assume you are open to our many, varied opinions.

You are not crazy; you have listed definite symptoms that should be investigated. You say you "can't afford to go to the doctor about it," but you must've seen a GP to have the blood testing that you have listed. (By the way, I hope you have your own copy of all those test results. It is important to have the actual numbers. When you say, "they're all fine," I wonder who has determined that.) For instance, if the serum B12 level was below 550 pg/mL, that is considered suboptimal – even a deficiency – by many scientists today. The standard range is set too low in US labs. And it is generally accepted that the serum B12 test is inaccurate, certainly if a vitamin B supplement has been taken before the testing. (Folic acid in your B Complex can mask a B12 deficiency. Taking a folic acid supplement will not correct the neurological symptoms if you have a B12 deficiency causing those symptoms.)

Since all your symptoms are consistent with a B12 deficiency (and many other conditions), and since any person at any age (even 21) can develop a B12 deficiency, I would suggest you see your GP, discuss your well-written list of symptoms, and request further testing to rule out a possible B12 deficiency. A serum homocysteine test and a serum (or the more accurate urinary) methylmalonic acid test can rule out a deficiency in the blood. A HoloTranscobalamin (HoloTc) test is considered the most accurate test for a B12 deficiency, and it can indicate if there might be a deficiency in the tissues.

Since you are a "college athlete, running 60-80 miles a week," you might be able to get testing through the student health center or the athletic department.

It is estimated that 40% of the American population has a suboptimal level of B12. I think this is a strong possibility for your case… And it should be ruled out first.

Thank you very much for the replies.

Elliot B - You're right. Thank for the advice.

Jimmylegs - Sorry that this will be long!

B-Complex (2)


Vita-c (1) as ascorbic acid - 500 mg

Zinc (1) (gluconate) - 50 mg

Iron (1 night sometimes 1 in the morning too) (Hemo-x)
Vitamin C (as Ascorbic Acid) 200mg / 333%
Thiamine HCl (Vitamin B1) 5mg / 333%
Vitamin B6 (As Pyridoxine HCI) 5mg / 250%
Folate (as (6S)-5-methyltetrahydrofolic acid) 800mcg / 200%
(Equivalent to 1‚482mcg of (6S)-5-methyltetrahydrofolic acid‚ glucosamine salt) (Quatrefolic®)
Vitamin B12 (as Methylcobalamin) 3‚000mcg / 50‚000%
Iron (as Ferrous Gluconate) 18mg / 100%
Betaine HCL 50mg / **
Stomach 50mg / **
Duodenum 50mg / **
Liver 10mg / **

Vitamin D3 (2) - 1,000 IU

Magnesium Citrate (1) - 200 mg

Electrolytes (after hot days or hard workouts)
Calcium (as calcium carbonate) 100 mg 10%
Magnesium (as magnesium hydroxide, magnesium carbonate) 120 mg 30%
Manganese (as manganese gluconate) 2 mg 100%
Chromium (as chromium aspartate) 20 mcg 17%
Potassium (as potassium bicarbonate, potassium carbonate) 408 mg 12%
Stevia (leaf extract)

I take all my vitamins right before I go to bed.

My daily diet typically includes:

Breakfast:
half a bagel with peanut butter and chia seeds
or two slices sourdough bread with almond butter and jam
or more rarely mini wheats with almond milk

Snacks:
trail mix (raisins, peanuts, almonds, m&ms, etc)
and/or potato chips
and/or greek yogurt with fruit/chia seeds
and/or carrots/celery
and/or cashews
and/or peanut m&ms

Lunch:
other half of bagel with 2 fried eggs, 2-3 slices of roast beef,
mustard
fruit (usually grapes)

Snacks: (same as above)

Dinner:
tilapia
brussels sprouts, green beans or peas
either sweet potatoes or taro root, or more rarely white potatos

or
ground beef
peas/green beans and tomatoes
pasta
cheese sauce with almond milk
(all mixed up)

or
cut up beef
green beans
potatos
tomatoes
(slow cooked)

an hour and a half later: Ice Cream (Breyer's specifically since it's the only kind without corn syrup)

then 1.5-2 hours after that I take my vitamins.

I also have a Balance protein bar and gatorade after practice.

Thanks for the links and thank you for your help.

lyndacarol -

Thanks for the advice on getting that tested further. I'd never given B12 too much thought. My result was 1100 but I never went off supplements, so I might at well not even think about that number. I get my ferritin checked every few months (because I've had low iron in the past) so next time I get that done I'll bring my list of symptoms and ask about the other tests. Since I've had low iron in the past it makes sense that B12 could be the real culprit. The other tests I've had done by a doctor that doesn't believe in the limits the labs set. On every test she crosses them all out and writes her own more strict limits. I definitely do appreciate the perspectives.

thanks for all this! i will go through it tonight after my meeting. i just did a huge post on another thread and i have to get some other stuff done before any more writing

Thank you so much! I also forgot to add that I eat bananas a lot. I've had two IV iron infusions, and I've forgotten to take zinc for the last few weeks.

ok so supplement review first

1. vit C 1200mg - looks fine, i currently try for 1000mg per day, but when it comes to high dosing many times the daily recommended amounts long term, it probably can't hurt to keep an eye on copper, zinc, manganese, and calcium status.

2. total daily zinc ~66mg per day may be excessive, depending on the degree to which the iron supplements might be interfering with, and also the extent to which the bagels and bread are placing demands on, your available zinc. you also might want to watch your copper levels.

3. B-vits look fine.

4. i have no comment on betaine other than your body should be making its own HCL. i am not a fan of supplemental crutches for body systems and processes. much more interested in optimizing process via optimizing nutrition and hydration. after that, betaine etc, all that kind of stuff is fair game.

5. vitamin d3 dosage looks fine. more to come re interactions and timing

6. considered with diet, the 200 mag citrate may not be enough to meet your basic daily requirements plus oral d3 absorption demands. i am glad to see additional magnesium in your post-workout electrolyte product.

7. interactions and timing

you might want to think about spreading out your supplement intake throughout the day a bit more. your body can only deal with so much at one time. if you can do a little with each meal and at bedtime, you'll probably get more value out of them.

consider taking your d3 at midday with 200mg mag citrate, and a second 200mg mag citrate at bed time. beyond that, you still need another 200mg per day just for YOU, even on a cool or non-workout day. we can check to see whether your diet is getting you there.
if low mag has anything to do with any of your symptoms, and you add another 200mg to your regimen (as well as keep some of it separate from d3's influence) you should feel a difference within a day or two. i would expect low magnesium to contribute to most of your symptoms including twitching in your eyes and other muscles including diaphragm (ie hiccups), numbness, fatigue, the lump in the throat, and migraines.

8. testing

question: have you had any serum nutrients tested besides serum vit b12?

9. EFAs

another question: what do you do for omega 3s?

10. next steps

i am a little concerned about your copper status. i would expect your levels to be suffering given all the iron and zinc inputs (unless there is some copper in your zinc 50mg?). either way, it would be wise to assess your diet for total daily copper inputs.
possibly interesting research abstracts re neurological similarities between b12 deficiency and copper deficiency:
Copper Deficiency Myeloneuropathy Resembling B12 Deficiency: Partial Resolution of MR Imaging Findings with Copper Supplementation
http://www.ajnr.org/content/27/10/2112.full
Copper deficiency myelopathy produces a clinical picture like subacute combined degeneration
http://www.neurology.org/content/63/1/33

ok that's all i got for now - more on the food another time

Thanks for looking at my supplements! I'll definitely get in the habit of spreading them out in the manner you said.

2. Would it be better to take a 50 mg zinc every other day? Or 2 out of every 3 days?

4. That's too bad about the beatine being in the iron. I don't want to switch kinds though because it's the only one I can tolerate. I've been struggling with iron for years now. My ferritin was 2 in late 2009, supplemented for years (up to 100 mg elemental a day!) and the highest it ever got was a 29, and it mostly hovered around 13-20. I went for IV iron last March because I couldn't stomach the supplements anymore. My ferritin then went up to 179 a month later (though I've heard that's false so close to the infusion). Let me tell you.. I've never felt that good running before. My running times dropped like crazy. I went back up to high altitude over the summer and my ferritin crashed back to 10 in August. I got another IV and went back to Okla. for school. I think it was 150something about 6 weeks after the IV, then later November it was still a 54. Better than the 10-20 I'd had for the last 6 years, but not where I want to be as an endurance athlete (or healthy person in general.) That's when I started taking oral iron again because I thought I might have more luck absorbing the iron after being off of it for 9 months. Also the IVs were really expensive; not quite sure I could go that route again.

7. Definite will do.

8. Besides ferritin, I had a comprehensive metabolic panel test last March. Some nutrients are listed on there, but they don't specifically say "serum." If any that typically show up on that test are serum then I do have those numbers. Ideally, which nutrients should I try to get tested for?

9. Besides fish 3x a week, I was taking fish oil too, but only for a couple weeks. Is that something I should get in the habit of?

Interesting about the copper. Really interesting. I do eat cashews quite a bit, but if I'm taking in so much iron/zinc it seems like that still wouldn't be enough. Beef liver seems to have a lot of copper, but a lot of zinc/iron too. Would it be too much of a hail Mary to start eating it on occasion?

Thank you so much for your help. It means a lot to be learning about this.

jimmylegs wrote:4. i have no comment on betaine other than your body should be making its own HCL. i am not a fan of supplemental crutches for body systems and processes. much more interested in optimizing process via optimizing nutrition and hydration. after that, betaine etc, all that kind of stuff is fair game.

Betaine usually isn't taken for the HCl. Betaine is also known as trimethylglycine. It's typically taken by people who have high homocysteine due to methylation cycle malfunction.

Assuming 1 mol HCl/mol betaine HCl, 50 mg of betaine HCl provides only 11.9 mg HCl.

betaine for hcy, sure. https://www.google.ca/?gws_rd=ssl#q=betaine
there are a few essential nutrients of concern for pwms and for hcy levels.. eg b vits, zinc. i personally would be interested in maxing out the impact of those nutrients on hcy levels, prior to using a betaine supplement.

in my xp betaine hcl products are for working on stomach acid. https://www.google.ca/?gws_rd=ssl#q=betaine+hcl
never finished that first bottle i picked up in the early days after dx.

http://ajcn.nutrition.org/content/80/3/539.full
"Humans obtain betaine from foods that contain either betaine or choline-containing compounds. ... The principle metabolic fate of choline is via irreversible oxidation to betaine in the liver and kidney"

whfoods has some interesting info on choline and betaine:
http://www.whfoods.com/genpage.php?tname=btnews&dbid=19
"Compared to those whose diets contained <250 mg/day of choline, subjects whose diets supplied >310 mg of choline daily had, on average:
22% lower concentrations of C-reactive protein
26% lower concentrations of interleukin-6
6% lower concentrations of tumor necrosis factor alpha
Compared to those consuming <260 mg/day of betaine, subjects whose diets provided >360 mg per day of betaine had, on average:
10% lower concentrations of homocysteine
19% lower concentrations of C-reactive protein
12% lower concentrations of tumor necrosis factor alpha"

so again, whether we're talking hcy, stomach acid, or something else entirely, i would personally worry about optimizing basic essential nutrients from food before i went to a supplemental product such as betaine (or betaine hcl). when you work on basic macronutrient and essential micronutrient requirements from diet, choline and betaine and any number of excellent things should be coming along for the ride. for me, i'm most of the way to med diet targets for choline and betaine by the time i'm done breakfast

Went to the campus health clinic today. The doctor was really nice and listened to everything I was saying without making me feel like a hypochondriac.

She said she would run the initial tests that needed to be run (one was the regular ferritin I think, and a metabolic panel) but I'm not exactly sure about the rest. They took 4 vials anyway.

She said it could be endocrine or neurological and said if we don't find anything I might need to go to a neurologist, but I hope it doesn't come to that since my symptoms aren't that bad.

I should hear by next Tues or Weds.

heya, glad the doc was nice! 'initial' tests probably will be standard stuff not the nutrients you're particularly interested in, but can't hurt to keep fingers crossed and think positive thoughts lol

i noticed i didn't respond properly to your last message. how's it been going, distributing the supplements out through the day? any issues crop up?

re the zinc, you could certainly try taking a 50 every other day. basically, it's best to do as much as you can towards RDA with diet, keep an eye on your blood work, and supplement if and as necessary.

re the low iron issue. it's pretty much a number one go to concern for athletes. you probably already do this, but if you combine iron rich foods with vit c foods it should help some. other than that has anyone ever tested you for beta thal?

i am sorry i didn't answer re tests to ask for prior to your trip to the clinic. they probably won't test things like serum zinc, serum mag, or serum copper but those would be great tidbits of info to go with your serum ferritin and serum d3 info.

fish oil is most definitely a good idea, if your dietary fish isnt rich in EFAs. excellent stuff for the brain, among other things so, what kind of fish do you eat 3x weekly?

beef (veal) liver would be an excellent thing for you to work into your diet on occasion. because of that nice shot of zinc and iron in there as well as the copper, it could help you ease off on the supplemental iron and zinc a bit maybe!

happy to help. i'm weirded out that i didn't respond to your earlier post before because i know i read it. maybe i accidentally lost the reply.

anyway, glad you've got the first set of bloodwork results on the way - if at all possible, get your own copy of results! push for it if you have to

Distributing the supplements is great. I feel like the Mag has helped the twitching stuff. My vision has started to get better too. The tingling in my feel is still bad though. It doesn't happen all the time or anything, but the temperature outside has been getting hotter and esp. with hard workouts I can feel it. I've also been getting this feeling in one of my legs like there's warm water on it. Kind of strange, It was 64 F today. When May comes around.. urgh. So hot in Okla.

Tilapia! But I also picked up flax milk. Sounds weird but tastes really good and 1200 mg Omega-3 in 8 oz.

They never have problems with giving me my own copy. Normally I can just see it over the internet, and if I can't they'll print me one.

Haven't been tested for beta thal.

I scrounged up a copy of my last CBC (from 9/29). Here's the results:

WBC 4.8 10e9 / L
RBC 4.63 10e12 / L
Hemoglobin 14.7 (highest in the last year was 15.1) g/dL
Hematocrit 44.0 % (higher end of the range)
MCV 95.0 fL (higher end of range)
MCH 31.7 pg (higher end of range)
MCHC 33.4 g/dL
neutrophil 74.4%
lymphocyte 20.1 %
monocyte 3.7 %
eosinophil 1.0 %
basophil .6 %
neutrophil absolute 3.58 10e9 / L
lymphocyte absolute .97 10e9 / L (flagged as barely low)
monocyte absolute .18 10e9 / L (also flagged barely low)
eosinophil abs. .05 10e9 / L
basophil abs. .03
platelet 261 10e9 /L
MPV 9.9 fL
RBC dist width 13.3 %
RDW-SD 46.5 fL (higher end of range)

Iron 113 UG/DL

ferritin 145 ng/dL

The low abs. lymphocytes seem to support the copper hypothesis anyway, but the test is rather old.

okay all interesting stuff.

glad to hear the mag is making a difference. would love to see a serum magnesium level when and if you get a chance.

ack tilapia i don't know how you do it lol. that's on flavour alone. i just went looking for an omega 3 comparison tilapia to salmon and found this:
http://www.drweil.com/drw/u/QAA400472/A ... lapia.html

related research
Omega-6 (n-6) and omega-3 (n-3) fatty acids in tilapia and human health: a review
http://informahealthcare.com/doi/abs/10 ... 0903140503

so, you might want to rethink the tilapia 3x/wk routine. this is a great resource for tracking inflammatory vs anti inflammatory foods in diet:
http://inflammationfactor.com/look-up-if-ratings/
the idea is, you want to aim for a daily score of +50 in general, higher (+100) when you don't feel great.

glad to hear you're enjoying flax milk my understanding of short chain veg sources of omega 3 is that they're not the most efficient source, because your body has to convert them to the animal form, the long chain omega 3 fatty acids. i just searched 'compare flax milk to salmon omega 3' and got this first: http://chriskresser.com/why-fish-stomps ... of-omega-3
so, the flax will be doing something, but it might not be enough to balance off the high omega 6 in the tilapia.

good to hear you can get your results easily, nice that you posted the last set

that ferritin level looks great but if it was 54 by november, guess it was transient your hemoglobin hematocrit MCV and MCH would probably come along for the ride as the iron / ferritin levels dropped. i read a little more on beta thalassemia and it looks like it might not be a relevant concern for you: http://www.ncbi.nlm.nih.gov/pubmed/119417 i know you can have b-thal and iron deficiency anemia at the same time, but for you it's probably the more commonsense endurance athlete effect. esp since no doc has looked at it.

can i ask which iron / vit C food combos you eat most often? there might be some meaningful tweaks that could be worked into your routine.

ok sorry if that one was a bit of a black cloud of a post :S hopefully helpful though!!