Undiagnosed

New members should feel free to introduce themselves here
Zyklon
Family Elder
Posts: 336
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Undiagnosed

Post by Zyklon » Fri Sep 13, 2019 8:39 pm

Yeeeey another coffee lover, welcome ;)

How much coffee do you drink daily? Coffee lowers magnesium in your body. A perfect explanation for your cramps.

I suggest you daily taking 2x200 mg magnesium citrate which is perfectly safe. One in the morning and one before sleeping. I am sure that you will see improvements in a few days. Especially if you drink lots of coffee.

Take care
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

User avatar
jimmylegs
Volunteer Moderator
Posts: 12054
Joined: Sat Mar 11, 2006 3:00 pm

Re: Undiagnosed

Post by jimmylegs » Sat Sep 14, 2019 4:48 am

arg solo iron and solo vit d prescription, sadly typical. *sigh*.

please DO NOT take iron alone when you don't have a zinc result. iron supplements lower zinc status, zinc is an issue for ms patients, and zinc is seriously depleted by a pregnancy, never mind 3 and a bit, and never mind ones that haven't been managed with supplements to compensate for that pesky ingredient-hungry human being manufacturing process. at least you can take steps towards informed corrective action now :)

re vit d, i hope your rx is at least for d3 and not d2. i'll be interested to hear about that. and please DO NOT take d3 alone without at least magnesium and preferably a multi vit/min too. i and others have felt the consequences of mag depletion secondary to relatively moderate 'safe' daily d3 doses and they are not. fun.

you have some good starting details on managing mag/d3 supplement forms doses and timing. please advise re the details of your vit d and iron prescription so that we can give the best input in terms of rounding them out. and if you can make a special request of the doc for a serum or plasma zinc and a serum magnesium test that would be awesome. if you need to present literature to make the case with your doc, i can send you some links and you can print research abstracts to take along. there are useful details out there for working on zinc in the context of iron deficit when supplement pills are in the picture. we can hash out thos details once we have more info on the iron prescription piece of the puzzle.

as promised, chowder recipe: http://www.whfoods.com/genpage.php?tname=recipe&dbid=32
note the instruction: eat it weekly to stay topped up on iron and zinc :)

p.s. z ^ is the actual king of getting tests and results fast, and then taking prompt corrective action, with awesome effects.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Ilovecoffee
Getting to Know You...
Posts: 10
Joined: Fri Sep 06, 2019 5:51 pm

Re: Undiagnosed

Post by Ilovecoffee » Sun Sep 15, 2019 12:26 pm

Thanks sm for the advice. I usually drink 2-3 cups a day but lately have been only drinking one since I’ve been experiencing anxiety.
I was told to take 2000 units of vitamin d3 and 300mg of ferrous fumarate daily. I also recently bought cod liver oil which has 1000iu of vitamin d. And I do want my zinc and magnesium levels tested, so yes I would love those links. Thank you.
I’ve always heard that ms is not hereditary but have noticed quite a few people whose stories I read actually have a parent who has ms as well. This is now my worst fear. It would kill me if one of my kids inherited my illness. Is there any way to find out if my kids are at risk? Are there ways to prevent it?

User avatar
jimmylegs
Volunteer Moderator
Posts: 12054
Joined: Sat Mar 11, 2006 3:00 pm

Re: Undiagnosed

Post by jimmylegs » Sun Sep 15, 2019 2:02 pm

good call on the coffee reduction; you'll excrete less mag in urine. (bienvenue a TMI-land lol)
  • The effect of dietary caffeine on urinary excretion of calcium, magnesium, sodium and potassium in healthy young females
    https://www.sciencedirect.com/science/a ... 1784801323
    "increased output of magnesium appeared to be due to the combination of both a slightly increased urinary magnesium concentration and volume."
good call as well re the cod liver oil for d3. as for your prescribed 2000 IU vitamin d3 daily dose, that is a reasonable input and while it does not raise red flags re excess, it may not be as effective as quickly as you might like without any cofactors in the mix.

the addition of magnesium from all sources (foods, fluids, transdermal, supplemental) can be expected to improve your d3 dose-response. especially given your starting d3 level. we need lots of magnesium on a daily basis - probably more than the current RDIs for mag (they are under review). most people get about half of the existing low recommended mag amount.
you've already seen above some recommendations re dose, chemical form and timing in relation to d3 intake. try to maximize your mag input from food and if you enjoy them, epsom salts baths. if you were to choose a supplement and then experienced an excessive laxative effect, you would likely need to lower the dose or choose a higher quality product (eg switch from mag oxide which is a good laxative, to mag glycinate which modifies mag oxide with glycine and is better absorbed into body tissue).

as with most things, it is possible to overdo magnesium. i currently take up to 2 per day of a 200 mg magnesium glycinate product that says 1 per day on the label. that's in addition to the bit of mag in my multi vit/min and that total is ok; i know i probably need more like 600mg per day altogether. you just have to not be ridiculous with it :) at times when my diet has been high in mag, i will start to feel side effects from a second mag glycinate pill in a day. specifically, sluggish muscles and so it's not as easy to climb the stairs.

edit: i had meant to comment on the iron supplement prescription as well. related:
  • Iron and zinc interactions in humans
    https://academic.oup.com/ajcn/article/68/2/442S/4648664

    ...a total dose of >25 mg Fe may produce a measurable effect on zinc absorption. This could occur if iron supplements are taken with a meal, and iron experts recommend that iron supplements be taken between meals...
  • Competitive Interaction of Iron and Zinc in the Diet: Consequences for Human Nutrition
    https://academic.oup.com/jn/article-abs ... 27/4779824
    ...The interaction of iron and zinc and competitive inhibition of zinc uptake by excess iron in ratios of 2:1 or greater, when the total amount of ionic species is greater than 25 mg, appear to have a measurable effect on human zinc nutriture...
  • Iron, copper, and zinc status: response to supplementation with zinc or zinc and iron in adult females
    https://academic.oup.com/ajcn/article-a ... 45/4716268
    ...Supplementation with Zn poses a risk to Fe and Cu status. Inclusion of Fe with Zn ameliorates the effect on Fe but not on Cu status...
i can't find the exact study i wanted to but the idea is that it's a balancing act. in your case to balance iron intake you can supplement zinc. also smart to take zinc between meals. the zinc level is highest naturally mid-morning so if you took it first thing that would probably make the most sense to your body. which would mean iron could go in later in the day. iron tends to be shall we say, binding. so if you need a laxative, magnesium oxide is your friend lol. can't hurt to have a couple different forms handy for different purposes.

the daily upper limit for zinc from supplements is 40 mg. if you go above 50mg per day you need to watch for copper depletion. anecdotally, others here have noticed reduced copper status on lower zinc doses but as long as the ratio of the two is ok in serum, ie copper level doesn't sink *too* much lower than zinc, it should not become an issue. i get 10mg zn in my multi plus an additional 30mg in a zinc picolinate supplement (best absorption per the available research). i take it 5 days per week and take the weekend off. if you experience nausea after taking zinc between meals, you can take less at one time. you can also add food but that can reduce zn absorption.

the weekly chowder would be good for long term maintenance once you know your levles for both zinc and ferritin are in good shape. eg around 18 umol/l for serum zinc (noting also that around 17 umol/l copper is good in ratio terms) and 80 ug/l for ferritin.

ok back to the original post:

if one person's anecdote is any consolation, there's no-one in my family with ms on either side.
as for prevention for kids sake, research suggests that keeping vit d3 status in good shape would be smart. i would add, nourish the immune system in general and avoid lifestyle contributors to inflammation.

links to help make the case for serum mag and serum zinc testing are coming your way soon :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Zyklon
Family Elder
Posts: 336
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Undiagnosed

Post by Zyklon » Sun Sep 15, 2019 4:21 pm

I have 4 and 6 years old sons. Not any ms history in the family. They have started daily D3 of 600 and 1200 IU after my diagnosis. Healthy habits, no smoking, manageable stress for them.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

User avatar
NHE
Volunteer Moderator
Posts: 5285
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Undiagnosed

Post by NHE » Mon Sep 16, 2019 1:51 am

Zyklon wrote:
Sun Sep 15, 2019 4:21 pm
I have 4 and 6 years old sons. Not any ms history in the family. They have started daily D3 of 600 and 1200 IU after my diagnosis.
A high quality fish oil would be good too.

User avatar
jimmylegs
Volunteer Moderator
Posts: 12054
Joined: Sat Mar 11, 2006 3:00 pm

Re: Undiagnosed

Post by jimmylegs » Tue Sep 17, 2019 7:47 am

starting follow-up w two sample studies:
  • Lower Serum Zinc Levels in Patients with Multiple Sclerosis Compared to Healthy Controls (2018)
    https://www.mdpi.com/2072-6643/10/8/967

    MS patients showed significantly lower zinc concentrations than HCs (p < 0.001).

    zinc level in µmol/L (mean (SD))

    patients 12.5 (2.1) µmol/L
    HCs 14.6 (2.3) µmol/L
  • The emerging role of serum zinc in motor disability and radiological findings in patients with multiple sclerosis (2019)
    https://link.springer.com/article/10.11 ... 019-0107-6

    Serum zinc level in MS patients and control group

    Serum zinc level in μg/dL [mean (SD)] (converted to umol/l)

    relapse 65.29 (16.92) x 0.153 = 9.99 umol/l
    remission 67.97 (15.28) = 10.4 umol/l
    controls 82.15 (15.496) = 12.57 umol/l
my 2c:
note that many results above, including the patient mean in the first study, could be considered 'normal', so having the lab flag only an outright deficiency to you or your doc is useless in terms of delivering an action item for your dietary or supplemental followup.
notice also that in the numbers above that there's almost overlap between highest patient and lowest hc mean levels across the two studies above, and there's definitely overlap in the two groups' complete range of serum levels.
as you get into the wider research base you find a higher mean serum zinc zone in which no patients appear (and of course higher than that patients appear again as you get into toxicity). but that 'no patient' zone is the target and it's roughly centred high in the serum zinc normal range. i don't worry about having a serum zinc level right at the top of the 'normal' range because if it matches an array of healthy control 'means', then almost half of those are even higher than the top end of normal. i have a bunch of such studies on file and at the end of last year i charted them. interesting stuff.

magnesium test rationale to follow.
if you wish i can also relay links to studies looking at nutrient status and effects on pregnancy outcomes.
for now, back to my own work :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

User avatar
jimmylegs
Volunteer Moderator
Posts: 12054
Joined: Sat Mar 11, 2006 3:00 pm

Re: Undiagnosed

Post by jimmylegs » Tue Sep 17, 2019 10:47 am

the state of the literature on magnesium specifically in ms is less than optimal. fwiw:
  • Assessment of serum magnesium, copper, and zinc levels in multiple sclerosis (MS) patients (2007)
    https://pdfs.semanticscholar.org/e509/b ... 67d0b9.pdf

    Table-1: serum magnesium level differences according to sex in MS patients referred to neurology clinics of Kashan 2004-2005

    MS Patient 35 1.87 ± 0.37 mg/dl??? x 0.411 = 0.79 mmol/l
    Healthy 35 2.22 ± 0.24 mg/dl??? x 0.411 = 0.91 mmol/l
major problems with this study include apparent ELL issues in the abstract eg classing the patients as controls and other participants as cases. also, the authors' failure to specify units of measurement really gets my goat. on the assumption that they mean mg/dL, the conversion to SI is x 0.411 to get mmol/l.

issues aside, the reported numbers are consistent with findings elsewhere in the literature re magnesium in health and disease.

again, the mean levels reported in both groups would be considered within the range of 'normal' at any lab and if you were tested and came back with results in this ballpark neither you nor your doc would be warned regardless of whether your levels were more consistent with a low-normal ms patient than with, in this case, a mid-normal healthy control.

recall the docs did nothing corrective for my friend with chemo-depleted mag until her levels dropped to 0.50 mmol/l. and as i mentioned earlier based on research review i am more interested in the very high end of normal - specifically 1.1 mmol/l. this is again based on a study of the wider literature. and yes you can overdo magnesium. the experiments have been done, back when they were trialing mag for use as a general anaesthetic and if memory serves the real problems in an acute sense start to show up in the serum mag = 4 mmol/l ballpark. there's other research documenting undesirable effects of chronic serum mag well above normal but i don't recall the details off the top of my head. more another time.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

User avatar
jimmylegs
Volunteer Moderator
Posts: 12054
Joined: Sat Mar 11, 2006 3:00 pm

Re: Undiagnosed

Post by jimmylegs » Tue Sep 17, 2019 11:08 am

ok so this one reports serum mag in mg/l so we divide by 10 to get mg/dl and then x .411 to get mmol/l.
serum means in controls = 2.04 mg/dl x .411 = 0.84 mmol/l
serum means in ms patients = 2.03 mg/dl x .411 = 0.83 mmol/l

ie lots of overlap here but still a trend to lower mag status in patients compared to controls, and i would say both groups are suboptimal. in fact i would wonder what kinds of health issues the controls might be manifesting associated with their low mag status, but they didn't have a neuro dx so qualified as controls.

the case for mag testing will be more readily made based on more general studies of mag status in health and disease. i have a file. related post pending.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

User avatar
jimmylegs
Volunteer Moderator
Posts: 12054
Joined: Sat Mar 11, 2006 3:00 pm

Re: Undiagnosed

Post by jimmylegs » Sun Sep 22, 2019 2:49 pm

while we wait for better research on mag status in ms, we can rely on the bounteous research on the differences in serum mag status in health and other diseases, and aim to be like the healthies. a related oldie/goodie:

Vitamin D resistance in magnesium deficiency (1976)
https://academic.oup.com/ajcn/article-a ... 54/4649402
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Ilovecoffee
Getting to Know You...
Posts: 10
Joined: Fri Sep 06, 2019 5:51 pm

Re: Undiagnosed

Post by Ilovecoffee » Fri Oct 04, 2019 3:02 pm

Thanks for all the info! I have an appointment in a few weeks and I will be sure to bring these.

I’ve been taking magnesium for the past couple of weeks and noticed an improvement with my twitching muscles. I still get them but less often. The tingling in my foot is gone. But I did get new symptoms this month, they are hot/ cold and prickly sensations in different parts of my body. Also, the dizziness/off feeling is still here but sometimes I don’t notice it. It may have improved but it’s hard to tell if it really has or if I just got used to it. I’m in the third month of this relapse. I’ve never had one last this long. Is it likely that it’s turned to SPMS?

User avatar
jimmylegs
Volunteer Moderator
Posts: 12054
Joined: Sat Mar 11, 2006 3:00 pm

Re: Undiagnosed

Post by jimmylegs » Fri Oct 04, 2019 3:40 pm

hey there nice to hear from you :) can you share info on the details of your magnesium product and the details of how exactly you've been using it in relation to other inputs? it can make a difference. i'm curious to hear how the info posted earlier translated or didn't into your routine. glad to hear you've had some improvement to start off.

i'm also curious to learn whether you have built some zinc into your regimen, to balance out all that iron. i have to say that when i back off on the supplemental zinc that is when i myself am most likely to have the legs start doing a bit of odd jumping. you could expect high iron intake with background low zinc to start with, to have a potentially similar effect.

the burning/prickly element may also have a nutrition connection. i'm thinking of the b vitamins - especially thiamine. if you want to try its effect you could pick up a b100 complex and take it morning, noon, eve and bedtime for a week. you could even add up to 200 mg thiamine each time. that's an excerpt from an old multinutrient protocol for ms and it's a therapeutic short term idea only, not at all suitable for long term maintenance scenarios. the main issue in the bvit department is that b6 can be a problem if taken at high doses (eg 100+mg per day) over the long term.

i'm afraid i can't comment on the spms question because i never get back to 100% myself. i have permanent peripheral nerve damage. it's just there, no matter what else might be going on!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Ilovecoffee
Getting to Know You...
Posts: 10
Joined: Fri Sep 06, 2019 5:51 pm

Re: Undiagnosed

Post by Ilovecoffee » Wed Oct 09, 2019 7:31 pm

Hi jimmylegs, thanks it’s nice to hear from you as well.
I’ve been taking 400mg of magnesium citrate daily, although sometimes I forget. I’ve also been taking epsom salt baths here and there. I added shellfish to my weekly diet and just recently started taking a zinc supplement ( 25mg a day) along with b12 (1000mcg). Also still taking Vitamin d3 pills 2000 iu, 300mg of iron and cod liver oil. Does this sound ok?
I realized that theres a pattern to the new symptoms that are happening every month, they happen before or during menstruation(sorry tmi). Not sure why. Hoping there’s an end in sight.

User avatar
NHE
Volunteer Moderator
Posts: 5285
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Undiagnosed

Post by NHE » Wed Oct 09, 2019 7:50 pm

Ilovecoffee wrote:
Wed Oct 09, 2019 7:31 pm
Hi jimmylegs, thanks it’s nice to hear from you as well.
I’ve been taking 400mg of magnesium citrate daily, although sometimes I forget. I’ve also been taking epsom salt baths here and there. I added shellfish to my weekly diet and just recently started taking a zinc supplement ( 25mg a day) along with b12 (1000mcg). Also still taking Vitamin d3 pills 2000 iu, 300mg of iron and cod liver oil. Does this sound ok?
Be sure to take about half of your magnesium separately from the D3. This will give your body an opportunity to absorb it so the D3 doesn't use it all up. I became magnesium deficient taking MgCitrate and 2000 IU D3. I started getting painful charlie horse type cramps in my calf muscles and in the soles of my feet at night. Splitting up the Mg fixed it in a couple of days.

Ilovecoffee
Getting to Know You...
Posts: 10
Joined: Fri Sep 06, 2019 5:51 pm

Re: Undiagnosed

Post by Ilovecoffee » Wed Oct 09, 2019 8:14 pm

Alright, thanks for the advice.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post