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cybele
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Hi Friends *waves shyly*

Post by cybele »

I am new to the forum, but since I keep coming back to here I figured I should join the community. I was dx'd with RRMS about six months ago. The odd bit about me I guess is that I'm a transgender woman; I had been taking anti-androgens and estradiol for gender transition for a little over a year prior to my MS dx. They found the MS because I had a flare of uveitis and that prompted an mri.

The thing is this: I was waaaay sicker before, prior to gender transition, but I started changing my diet, exercise and sleep habits (I know it sounds so cliche but really) for gender transition. Like I became highly motivated to get all the lifestyle stuff in order for transition (my doc said she wouldn't give me hormones until I quit smoking, and so on). Another big change was sleep: The old me shifted from DSPS to Non-24, never really finding a healthy pattern. Now I have some insomnia but I get regular sleep at regular times. All these little things add up. Sometimes it feels like MS is death by a thousand cuts.

For now I have decided to hold off on a DMD. I am writing about my experience with MS and gender transition here on my blog https://blitheanima.wordpress.com/
THX1138
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Re: Hi Friends *waves shyly*

Post by THX1138 »

Welcome. :-H
You will find caring, knowledgeable people here.

I noticed that you said,
All these little things add up. Sometimes it feels like MS is death by a thousand cuts.
That made me think of something that a nutritionally oriented doctor told me. He said that MS is just a collection of symptoms.

I saw on your website that you take vitamin D and I tend to get nervous when people mention that they take vitamin D because of my own experience with high dose vitamin D and:
Magnesium Supplementation in Vitamin D Deficiency. https://www.ncbi.nlm.nih.gov/pubmed/28471760
Mg is essential in the metabolism of vitamin D, and taking large doses of vitamin D can induce severe depletion of Mg. Adequate magnesium supplementation should be considered as an important aspect of vitamin D therapy.
CONCLUSIONS:
Vitamin D screening assay is readily available, but the reported lower limit of the normal range is totally inadequate for disease prevention. Based on the epidemiologic studies, ∼75% of all adults worldwide have serum 25(OH)D levels of <30 ng/mL. Because of the recent increase in global awareness, vitamin D supplementation has become a common practice, but Mg deficiency still remains unaddressed. Screening for chronic magnesium deficiency is difficult because a normal serum level may still be associated with moderate to severe deficiency. To date, there is no simple and accurate laboratory test to determine the total body magnesium status in humans. Mg is essential in the metabolism of vitamin D, and taking large doses of vitamin D can induce severe depletion of Mg. Adequate magnesium supplementation should be considered as an important aspect of vitamin D therapy.
I just ran across this one: http://www.precisionnutrition.com/stop-vitamin-d
Why’s that vitamin D low?
Research over the last few years has indicated that a large percent of the world’s population is low in vitamin D. However, the response to this is kinda strange.
Healthcare practitioners typically test a patient’s vitamin D levels and notice that they’re low.
Then s/he prescribes a vitamin D supplement.
The patient comes in again a few months later and vitamin D is still low.
So the doctor increases the supplement.
Interestingly, very few professionals ever ask: Why is this person’s “vitamin D tank” leaking in the first place?
The answer might surprise you.
Last edited by THX1138 on Wed Oct 25, 2017 11:00 pm, edited 2 times in total.
THX1138
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Re: Hi Friends *waves shyly*

Post by THX1138 »

The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults; a health warning is needed for "normal" results. https://www.ncbi.nlm.nih.gov/pubmed/20170394
cybele
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Post by cybele »

Thanks for the suggestion... magnesium is one of those I sometimes add in. I have trace minerals ionic magnesium drops. I originally got them to help with muscle spasms.

"To date, there is no simple and accurate laboratory test to determine the total body magnesium status in humans. " :( so it's just guesswork? I'm taking 5000 units of vit d a day. I wonder how much magnesium I should take?
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NHE
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Post by NHE »

cybele wrote:I'm taking 5000 units of vit d a day. I wonder how much magnesium I should take?
Try 200-400 mg of magnesium per day as magnesium glycinate or magnesium citrate. Be sure to take some of your magnesium separately from your vitamin D3 dose, for example, morning vs. evening. This will give your body a chance to incorporate it before the vitamin D3 metabolism gobbles it all up.
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jimmylegs
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Post by jimmylegs »

yes yes yes - some mag with, some mag away. just had to tweak this for a friend yesterday or the day before. was taking all mag at diff time than d3, vs some with and some sep.
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THX1138
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Re: Hi Friends *waves shyly*

Post by THX1138 »

cybele wrote:Thanks for the suggestion... magnesium is one of those I sometimes add in. I have trace minerals ionic magnesium drops. I originally got them to help with muscle spasms.

"To date, there is no simple and accurate laboratory test to determine the total body magnesium status in humans. " :( so it's just guesswork? I'm taking 5000 units of vit d a day. I wonder how much magnesium I should take?
Jimmylegs has much info on the correct use of the serum magnesium test to determine magnesium status.

Start low and gradually increase the amount of magnesium you take.

Using symptoms as your guide is a good method to know if you need more magnesium or not. Lab tests are also helpful, if they're interpreted correctly.

If you don't have one of the few conditions (kidney problems, heart block or bowel obstruction, and maybe a few others; I'm not sure) that make magnesium supplementation possibly something not to do, then concerns over getting "too much" magnesium are not issues of safety, but rather other things, such as the potential for overly soft stools or some temporary muscle weakness . I recommend going with a careful, but serious intent to get more magnesium.
I have taken, both orally and transdermally, huge amounts of magnesium over the years. The most I've ever taken day after day, orally, was 2000 mg a day. This did not produce muscle weakness or overly soft stools for me, but results may (and probably will) vary. This amount of oral magnesium will cause diarrhea in most people, I believe. I took 400 mg of the TRS magnesium 5 times a day. https://www.swansonvitamins.com/swanson ... um-60-tabs
Transdermally, I've taken a whole lot of magnesium also. I had a few magnesium sulfate IV's with 3.5 grams of magnesium in them. No problems whatsoever from these. And one of them majorly transformed my walking for part of the day.
Using magnesium chloride flakes i've done foot soaps that have lasted up to 4 hours, using a strong mix of about 5 cups of flakes to 1 gallon of warm water. No problems from these either. However they did clear my head nicely and give me energy that lasted for hours in addition to relaxing my muscles a moderate amount.
Using magnesium oil, which is a supersaturated solution of magnesium chloride and water, I've cleared my head many times in addition to improving my walking a good amount (not nearly as much as with the magnesium IV, though). These treatments usually are what I call "forearm treatments". This is where I rub magnesium oil into my forearm, keeping the forearm wet with the magnesium oil. The day I got my first order of magnesium oil I sat down at my computer desk not knowing what to expect and trying to be skeptical. I kept rubbing the magnesium oil into my right forearm. After about five minutes, I thought that I was maybe feeling some relaxation (a common effect from magnesium). After about 10 minutes I really did think I was feeling relaxation, despite my skepticism. After about 15 minutes of rubbing the magnesium oil into my forearm ( and keeping the forearm wet with the "oil", I could not deny the profound and pleasant relaxation it had given me. In the following months
many, many times I experienced very pleasant relaxation from both magnesium foot soaks and magnesium oil treatments. One thing about transdermal Magnesium treatments is that the magnesium does not enter the colon so it does not soften the stools.
I would purchase a few different products and experiment with them. I recommend the following:
https://www.swansonvitamins.com/swanson ... um-60-tabs
https://www.swansonvitamins.com/swanson ... ize=SWU481
https://www.amazon.com/Ancient-Minerals ... PLT2T?th=1
These certainly are not the only good magnesium products out there, but a very respectable sampling of magnesium products. With these products you will have a good quality oral magnesium, magnesium chloride flakes for foot soaks or baths and magnesium oil. You can, however, make your own magnesium oil using the flakes and water.
A page on Mg oil: https://empoweredsustenance.com/magnesium-oil-uses/

Here's a video talking about problems that insufficient magnesium can cause:

A good book on magnesium: https://www.amazon.com/Magnesium-Miracl ... um+miracle
Last edited by THX1138 on Thu Oct 26, 2017 12:38 pm, edited 1 time in total.
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jimmylegs
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Post by jimmylegs »

loads of discussion on here re how to interpret a basic serum magnesium test. all the hoopla about serum mag being a problem is pretty bs.

serum mag is used throughout the research to effectively group patients and controls. is it perfect? no. is the oft proposed more expensive alternative rbc test perfect? also no.

with both you target the upper portion of the normal range, recognizing that some labs use even lower ranges than others so sometimes 'ideal' can look like 'excess' in test results.

i have yet to encounter anyone symptomatic who has access to a test and comes back with high normal serum mag levels. normal, yes - but low to mid normal only. still not flagging as a problem in your typical doc's office. docs are still prescribing isolated d3 without adding mag. (same as they'll prescribe antibiotics without probiotics). hence the call for a warning.

most ppl do not meet daily mag requirements from diet or get the extra advised to compensate for depletions associated with lifestyle/environment (eg emotional or physical stress, surgery, strenuous exercise, high supplemental d3 intake, some drugs - notably PPIs, alcohol intake, etc).

without even going for bloodwork you can tally up the mag in your food choices over three typical, representative days and from there approximate your typical week, and average intake per day.

research has suggested magnesium intakes at 7-10 mg per kg body weight per day from diet (primarily) and supplements combined. go for the higher end of that range if you are affected by multiple potential depletion factors.
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cybele
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Re: Hi Friends *waves shyly*

Post by cybele »

Thanks folks! I am going to be taking the magnesium a lot more seriously and do a bit more homework about it. I understand the tests are really just a tiny snapshot of a process. My first dose of LDN is on it's way to me now and I'm excited to try it.

I think I am having the hardest time with the cognitive challenges. I've been looking at galantamine, maybe just a few times a week, and for the lucid dreams too! Also modifinal, or ritalin, perhaps if my neuro is in a good mood.
THX1138
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Re: Hi Friends *waves shyly*

Post by THX1138 »

I found that keeping well hydrated is really important to have a clear head and for energy, too.
Fatigue is often an earlier sign of dehydration then thirst is.

http://www.thisisms.com/forum/general-d ... 24479.html ----- Hydration - more to it than you may think
http://www.thisisms.com/forum/general-d ... 23989.html ----- brain fog

Magnesium for energy, also.
Exercise, too!
And (I feel funny saying this) EATING.

It's good to hear you got your sleeping in order. :YMAPPLAUSE:
Last edited by THX1138 on Sat Oct 28, 2017 10:38 pm, edited 7 times in total.
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jimmylegs
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Post by jimmylegs »

yes. i learned over the years that when i thought i needed a nap what i actually needed was a glass of water. perks me right up just as if i were a wilting plant.
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THX1138
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Re: Hi Friends *waves shyly*

Post by THX1138 »

jimmylegs wrote:loads of discussion on here re how to interpret a basic serum magnesium test. all the hoopla about serum mag being a problem is pretty bs.

serum mag is used throughout the research to effectively group patients and controls. is it perfect? no. is the oft proposed more expensive alternative rbc test perfect? also no.

with both you target the upper portion of the normal range, recognizing that some labs use even lower ranges than others so sometimes 'ideal' can look like 'excess' in test results.

i have yet to encounter anyone symptomatic who has access to a test and comes back with high normal serum mag levels. normal, yes - but low to mid normal only. still not flagging as a problem in your typical doc's office. docs are still prescribing isolated d3 without adding mag. (same as they'll prescribe antibiotics without probiotics). hence the call for a warning.

most ppl do not meet daily mag requirements from diet or get the extra advised to compensate for depletions associated with lifestyle/environment (eg emotional or physical stress, surgery, strenuous exercise, high supplemental d3 intake, some drugs - notably PPIs, alcohol intake, etc).

without even going for bloodwork you can tally up the mag in your food choices over three typical, representative days and from there approximate your typical week, and average intake per day.

research has suggested magnesium intakes at 7-10 mg per kg body weight per day from diet (primarily) and supplements combined. go for the higher end of that range if you are affected by multiple potential depletion factors.
i have yet to encounter anyone symptomatic who has access to a test and comes back with high normal serum mag levels. normal, yes - but low to mid normal only.

Does this mean that you have not encountered anyone with spasticity whose serum mag level is high normal or above (if normal range is insufficient) :?: Like what I have :?:
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jimmylegs
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Post by jimmylegs »

i don't know, what's your serum mag level?
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THX1138
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Re: Hi Friends *waves shyly*

Post by THX1138 »

Magnesium Standard Range 1.6 - 2.3 mg/dL

8/12/14 10/17/14 10/31/14 2/24/16 1/21/17 1/22/17 1/23/17
1.9 --------- 2.1 ------ 2.2 ------ 2.2 ----- 2.0 ------ 2.0 ----- 2.0

Significant spasticity and morning spasms for this whole time frame. Worsening as time went by.


Maybe variations in hydration and blood volume explain things. :?:
I think my hydration was a lot better in 2014.
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jimmylegs
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Post by jimmylegs »

yea i like to see at least 2.3 to start. then see how you go. aiming for 2.3-2.7.

reference ranges available online are all over the place. in local labs is around 1.8-2.7 depending which lab. (actually, 0.65-1.05 or 0.7-1.1 mmol/l)

example of all over the place - from medlineplus.gov: "The normal range for blood magnesium level is 1.7 to 2.2 mg/dL (0.85 to 1.10 mmol/L). Normal value ranges may vary slightly among different laboratories."

1.1 mmol/l does not convert to 2.2 it converts to 2.7 mg/dL

so you've been at .82 or thereabouts this year. could be interesting to see how you do at 1.1

also note: http://www.thisisms.com/forum/natural-a ... ml#p246397

what's your daily requirement based on 7-10mg/kg body weight per day? what's your daily dietary intake in mgs? what's the typical daily add via supplementation?

good read: http://apps.who.int/iris/bitstream/1066 ... 50_eng.pdf

excerpt: "Lowenstein and Stanton (1986) established the reference interval (central 95th percentile) for the serum magnesium concentration of 0.75–0.955 mmol/l. ... we do not know what percentage of this population had an inadequate intake of magnesium and may have been magnesium deficient. Thus, the lower limit of the reference interval may have been flawed by having subjects in the “normal” population that were deficient in magnesium."

or the upper limit. jus sayin.

https://link.springer.com/article/10.10 ... 36?LI=true
"The mean serum magnesium level among subjects with metabolic syndrome was 1.8±0.3 mg/dl, and among control subjects 2.2±0.2 mg/dl, p<0.00001."

upper end of that healthy group is sitting at 2.4 or 0.99

http://europepmc.org/abstract/med/12693452
"Mean serum magnesium at baseline in the diabetic patients was significantly lower than that in controls (1.44 +/- 0.48 mg/dl Vs 2.29 +/- 0.33 mg/dl; p < 0.001)." 2.6 or 1.1

https://jamanetwork.com/journals/jamain ... act/607937
"the mean level (2.5±0.4 mg/dL [1.03 ± 0.16 mmol/L]) in a reference population of healthy volunteers was unexpectedly high" 2.9 or 1.2
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