From wheelchair to walking?

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labilios
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From wheelchair to walking?

Post by labilios » Thu Jan 10, 2019 11:14 am

Hello.
I have ppms 17 years and I am in a wheelchair few years.I can't walk.Do you know anyone that he was in wheelchair and now walks?

ElliotB
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Re: From wheelchair to walking?

Post by ElliotB » Thu Jan 10, 2019 11:44 am

Dr. Terry Wahls. There are probably others too! Some of the new treatments seem to be effective helping people with more advanced stages of MS.

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jimmylegs
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Re: From wheelchair to walking?

Post by jimmylegs » Thu Jan 10, 2019 1:12 pm

noting that wahls' back story is vegetarianism, therefore dietary elements of recovery methods cannot necessarily be generalized to all ms patients.

(aside: i'm still wondering whether you are taking 1 of 3 of your multis per day, or 3 of 3).
viewtopic.php?p=256224#p256224
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!

ElliotB
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Re: From wheelchair to walking?

Post by ElliotB » Thu Jan 10, 2019 1:38 pm

"therefore dietary elements of recovery methods cannot necessarily be generalized to all ms patients"

This may be true, no way of knowing for sure, but the fact is that some people with more advanced MS like PPMS and SPMS have seen improvements through a number of different protocols is very encouraging. I believe there have been success stories for cases involving advanced MS related to stem cell therapy, high dose vitamin D3, and FMT to name a few and in some cases, like Wahls, people have gotten out of their wheel chairs. The fact is just a few years ago, cases of these types of recovery were unheard of. Obviously more research needs to be done to determine what has transpired but I find that the fact that there have been some limited success stories highly encouraging!

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jimmylegs
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Re: From wheelchair to walking?

Post by jimmylegs » Thu Jan 10, 2019 2:11 pm

trial design associated with testing wahls' protocol efficacy has been disappointing to date.
i suspect many individuals would go far by paying closer attention to daily essential macro and micro nutrient requirements.
that said, sometimes damage is irreversible. i definitely let a few things go too long unattended, for my part.
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!

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jimmylegs
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Re: From wheelchair to walking?

Post by jimmylegs » Thu Jan 10, 2019 4:06 pm

found this 2016 intervention including ppms patients.
viewtopic.php?f=9&p=256334#p256334
not that it records the wheelchair bound regaining function mind you - design definitely still leaves something to be desired.
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!

labilios
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Re: From wheelchair to walking?

Post by labilios » Fri Jan 11, 2019 4:14 am

jimmylegs wrote:
Thu Jan 10, 2019 1:12 pm
noting that wahls' back story is vegetarianism, therefore dietary elements of recovery methods cannot necessarily be generalized to all ms patients.

(aside: i'm still wondering whether you are taking 1 of 3 of your multis per day, or 3 of 3).
viewtopic.php?p=256224#p256224
Hello.I take 1 multivitanin,but I started magnesium 350-400 mg per day.I did make blood test.I will learn the results next week.Do you know some good multivitamin brand?

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Re: From wheelchair to walking?

Post by jimmylegs » Fri Jan 11, 2019 5:07 am

great news that you added more magnesium than the bit in the multi. can you share a link to the product label?

good to hear re testing. as for the results, recall that the reference ranges can vary lab to lab, can be very broad, and depending what range your lab actually uses, you are likely to be much better off with a result right at the top of the range.

your multi is good, assuming this is correct:
https://www.vitacost.com/natures-plus-u ... 80-tablets
but it's a divided dose product ie you are meant to take three spread through the day to get one serving.
since you're only taking one, you're getting a third of the intended amounts.
consider taking more than one of these daily.

i use a three a day divided dose multi too, just not the same as yours.
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!

labilios
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Re: From wheelchair to walking?

Post by labilios » Fri Jan 11, 2019 9:05 am

jimmylegs wrote:
Fri Jan 11, 2019 5:07 am
great news that you added more magnesium than the bit in the multi. can you share a link to the product label?

good to hear re testing. as for the results, recall that the reference ranges can vary lab to lab, can be very broad, and depending what range your lab actually uses, you are likely to be much better off with a result right at the top of the range.

your multi is good, assuming this is correct:
https://www.vitacost.com/natures-plus-u ... 80-tablets
but it's a divided dose product ie you are meant to take three spread through the day to get one serving.
since you're only taking one, you're getting a third of the intended amounts.
consider taking more than one of these daily.

i use a three a day divided dose multi too, just not the same as yours.
1)https://www.iherb.com/pr/Doctor-s-Best- ... Tablets/15
i take one per day
2)https://www.iherb.com/pr/Nature-s-Plus- ... blets/7626 i take one per day

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jimmylegs
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Re: From wheelchair to walking?

Post by jimmylegs » Fri Jan 11, 2019 9:38 am

thx for the links. the first 2 pills per 200mg serving one looks familiar, re the second single-pill 250mg one i can't comment. i'm just not a big fan of proprietary blends.
so total intake from one of each would be 100+250=350mg
adding the multi, if you take all 3 of 3 needed per serving, that gets you up to 450mg of mag per day.
that should be fine as long as they are spread out, and only one of them goes in at the same time as any vitamin d3 supplement product.

side fyi - some authors suggest higher amounts may be needed based on body size and any lifestyle-based magnesium depletion factors in the mix (eg, 7-10mg/kg body weight/d). my friend is having this problem at the moment; extra large body size, a tendency to lower-than-ideal mag intakes from supplements and healthy food/fluid sources, lots of physical and emotional stress, AND supplemental d3 in the picture. last results came back outright deficient, and that's pretty bad when serum magnesium is the test involved.
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!

labilios
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Re: From wheelchair to walking?

Post by labilios » Fri Jan 18, 2019 9:05 am

good
Last edited by labilios on Fri Jan 18, 2019 10:12 am, edited 1 time in total.

labilios
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Re: From wheelchair to walking?

Post by labilios » Fri Jan 18, 2019 10:08 am

jimmylegs wrote:
Fri Jan 11, 2019 5:07 am
great news that you added more magnesium than the bit in the multi. can you share a link to the product label?

good to hear re testing. as for the results, recall that the reference ranges can vary lab to lab, can be very broad, and depending what range your lab actually uses, you are likely to be much better off with a result right at the top of the range.

your multi is good, assuming this is correct:
https://www.vitacost.com/natures-plus-u ... 80-tablets
but it's a divided dose product ie you are meant to take three spread through the day to get one serving.
since you're only taking one, you're getting a third of the intended amounts.
consider taking more than one of these daily.

i use a three a day divided dose multi too, just not the same as yours.

Hello.
I have my blood results
I want to share them.maybe you can help me.I am desperate because i think the results are normal,so maybe the worsening caused by ms.

zinc 97 ( ref.range 70-150)

25-OH Vit D 199 (normal 20-50 ng/ml)

glycose 71 ( ref.range 70-110)

urea,serum 52 (10-50)

creatinine 0.77 (0.6-1.4)

ca-calcium 9.7 (8.4-10.1)

mg-magnesium 2.1 ( 1.5-2.6)

B12 > 2000 ( normal 225-1000 pg/ml)

ferritin 37 (13-150)

fe-iron 91 (37- 145)

cu 125 (80-155)

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jimmylegs
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Re: From wheelchair to walking?

Post by jimmylegs » Fri Jan 18, 2019 2:51 pm

hi this is all good info to have.

first, take a deep breath. normal ranges by definition cover 95% of the population statistically.
if 95% of the population were also in perfect health, then it could make sense to equate normal to healthy, but it's not true.
in many cases you find ms patients with low normal levels of beneficial essential nutrients, while healthy controls have high normal levels for the same nutrients.

re results:

zinc 97 ( ref.range 70-150)
cu 125 (80-155)
ferritin 37 (13-150)

zinc is low normal, characteristic for ms.
copper:zinc ratio is high, a problem in many chronic illnesses.
the good news, you can safely boost zinc-rich foods and consider supplemental zinc, without worrying about depleting copper too far. in fact it would be great if adding zinc pulled that copper level down a bit.

with copper and zinc, the ratio is more important than the absolute serum values.
a healthy copper-zinc ratio in serum ranges from 0.7-1.0.
yours is 125/97=1.3
if you push the zinc up to 120 and achieving that pulls the copper down to 110, your bloodwork would be more consistent with healthy controls and less consistent with chronic illness.

ferritin is on the low side, it's my understanding that 80-90 is lowest risk.
adding more iron rich foods will help you boost that level without affecting other minerals.
if you take a ferritin supplement, it will interact with zinc. when you push iron up via a supplement, zinc will come down and vice versa. if you get some of each eg every other day, both will still come up but more slowly. safer than boosting one at the expense of the other.

d3 and magnesium

25-OH Vit D 199 (normal 20-50 ng/ml)
mg-magnesium 2.1 ( 1.5-2.6)

d3 is above, and mag is below where you want these, ideally.

the debate re ranges for d3 continues.

sample d3 cutoffs (i do not have time today to reference all of this):
<12.5 ng/mL or.............30 nmol/l - deficient (IOM, 2016)
12.5 - 20ng/ml or ......30-50 nmol/l - insufficient
20 ng/ml or ...............>50 nmol/l - adequate
36-40 ng/ml or ........90-100 nmol/l - protective for a variety of health outcomes
40-50 ng/ml or .....>100-125 nmol/l - reduced risk/protective re ms
40-60 ng/ml or .......100-150 nmol/l - recommended (endocrine society, 2011)

>60 ng/ml or .............>150 nmol/l - increased risk for some undesirable health outcomes
100 ng/ml or .............>250 nmol/l - increased risk for more undesirable health outcomes

related
https://ods.od.nih.gov/factsheets/Vitam ... fessional/
https://www.health.harvard.edu/blog/vit ... 6121910893

i haven't yet heard any good specific arguments for very high d3 levels other than 'it's safe' .
many arguments for the safety of higher levels are not yet looking at all factors worthy of measurement, from both personal and an environmental perspectives.

per the above, your d3 level is well above desirable for ms in particular and into a range which can represent higher risk for some health problems.

i personally am content with serum d3 levels in the 40-60 range as long as everything else is in good shape too.

your serum magnesium level is well down into the suboptimal section of the normal range, within which symptoms of mag deficit are to be expected.

pushing d3 higher at magnesium's expense is not a great idea.

magnesium
please consider 2.3 an absolute lower cutoff to protect from syptoms of mag deficit. 2.3-2.7 is a beneficial serum mag range.
it is possible to have much lower background magnesium levels than are represented in serum, so treat low normal serum mag as a stark warning sign.
ms patients have been documented with simultaneously 'normal' serum levels and deficient tissue magnesium.

vitamin b12 would be safer well below 1000 pg/ml. the relevant research is limited on this point, and i don't have the figure at my fingertips, but increased risk from high b12 starts to appear in the high hundreds, no higher than 950 if memory serves.

the high urea number, prompts me to ask if you have ever had serum ammonia or serum uric acid tested.

i ask because i personally had low uric acid, consistent with typical ms patients in research, which resolved only after i corrected deficient zinc (level at first ever zinc test was 56).

i never had ammonia or urea tested but the interaction in my system between uric acid and zinc, suggest to me that my ammonia (and urea) levels would have been high to extremely high.

to my thinking these different aspects help explain the severe cognitive issues i had leading up to my first zinc test. glad that's over now!

hope all of the above makes sense :)
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!

labilios
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Re: From wheelchair to walking?

Post by labilios » Sat Jan 19, 2019 4:04 am

Hello and thank you very much for so many advices. :smile:
some questions:
- ferritin is on the low side, it's my understanding that 80-90 is lowest risk.
adding more iron rich foods will help you boost that level without affecting other minerals.
if you take a ferritin supplement, it will interact with zinc. when you push iron up via a supplement, zinc will come down and vice versa. if you get some of each eg every other day, both will still come up but more slowly. safer than boosting one at the expense of the other.
Do you mean egg?

-ferritin is on the low side, it's my understanding that 80-90 is lowest risk.
adding more iron rich foods will help you boost that level without affecting other minerals.
I follow OMS diet (Jelinek diet ) and I don't eat meat.Do you think low iron and ferritin caused by this?Ι beleive molasses is great for iron (except meat)

-25-OH Vit D 199 (normal 20-50 ng/ml)
mg-magnesium 2.1 ( 1.5-2.6)
d3 is above, and mag is below where you want these, ideally.
I stopped taking high doses of vit d in april.since then I took 10000 iu D3 and I stopped taking D3 completely on 3 january 2019.how can I remove D3 from my body?I don't drink enough water the last few months.
-yours ref.range of 25-oh d have more details than mine

-your serum magnesium level is well down into the suboptimal section of the normal range
I started taking magnesium supplement after the blood exams.I hope mg will increase slowly

-vitamin b12 would be safer well below 1000 pg/ml.
I take ever day 1000 μg b12,I think 20 days-1 month now

-the high urea number, prompts me to ask if you have ever had serum ammonia or serum uric acid tested.
serum uric acid from last week:
4 (ref.range 2.4-6 mg/dl)
urea,serum 52 (10-50)

Also HbA1C: 4.8 (4.8-5.9 %)
glycose : 71 (70-110 mg/dl)
i don't know if it helps
do you believe if zinc,copper,ferritin etc will fixed, ms worsening could be reversed a little?
Do you believe high doses of vit d3 and less nutrients damaged my body?can i reverse that?
sorry for my english

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Re: From wheelchair to walking?

Post by jimmylegs » Sat Jan 19, 2019 7:16 am

labilios wrote:
Sat Jan 19, 2019 4:04 am
Hello and thank you very much for so many advices. :smile:
some questions:
- when you push iron up via a supplement, zinc will come down and vice versa. if you get some of each eg every other day
Do you mean egg?
no problem, and mea culpa, i meant exempli gratia ;) if taken daily you could separate zinc and iron tablets one morning and the other evening, or if less were needed you could take iron one day, zinc the next etc.
I follow OMS diet (Jelinek diet ) and I don't eat meat.Do you think low iron and ferritin caused by this? Ι believe molasses is great for iron (except meat)
yes. i was a strict vegan so ate no meat for about 15 years leading up to my diagnosis. i had low ferritin the whole time.
i had to work my way up to the food intakes that feel like restrictions to others. i found out how many different nutrient issues i had had slowly over time, after already diagnosed.

there are many things you can do to improve iron status eg ensure adequate zinc status, cook in cast iron, store an 'iron fish' with any flour, combine non-heme (veg) iron sources like spinach and kidney beans and/or molasses with healthy sources of vit c eg bell pepper.
i don't have an 'iron fish' but i do cook in cast iron regularly (about to cook breakfast in it, cooked dinner in it last night), and i am working through a batch of homemade tomato-based soup right now, which contains kidney beans for (non-heme) iron and bell pepper for vit C among other things.
i am not familiar with the fine details of oms but if clams are okay, those are rich in iron. a weekly bowl of clam chowder could be useful (i myself am way too picky when it comes to seafood).
I stopped taking high doses of vit d in april.since then I took 10000 iu D3 and I stopped taking D3 completely on 3 january 2019.how can I remove D3 from my body?I don't drink enough water the last few months.
10K is still a high dose. a late member of this forum maintained 10K daily d3 for a long time and even with daily magnesium intake his serum magnesium level remained deficient which implies he was in terrible shape re magnesium status in tissue. he suffered extreme spasticity (consistent with his lab-documented magnesium deficiency) and ultimately he ended his own life.
the d3 will come down with time. it hasn't been that long since you stopped high dosing with 10K per day. if you can, set up your environment to support regular water consumption through the day (not forgetting multimineral intake to go with).
-yours ref.range of 25-oh d have more details than mine
the range info above is augmented with different research sources. my local lab's reference info on a lab report is much more basic. eg they are happy with anything from 75-250 nmol/l.
I started taking magnesium supplement after the blood exams.I hope mg will increase slowly
keep it up :)
I take ever day 1000 μg b12,I think 20 days-1 month now
probably a bit much, especially considering daily needs are negligible by comparison. a multivit/min product would probably be fine. at the moment, i personally take 2/3 of a regular 3-a-day multi vit/min and 1/3 of a 3-a-day b complex. i definitely used to take a lot more, but i had also been severely deficient. the single time i ran a test after a proper washout period using no supplements, the lab assay was not sensitive enough to detect any b12 in my system at all.
the high urea number, prompts me to ask if you have ever had serum ammonia or serum uric acid tested.
serum uric acid from last week:
4 (ref.range 2.4-6 mg/dl)
urea,serum 52 (10-50)
oh i remember seeing that uric acid number now, sorry (or maybe someone else had a similar result recently??). either way, i didn't bother to do the conversion at the time. 4 converts to 238 umol/l, which is consistent with ms patients in remission. healthy controls' uric acid levels sit around 290-300 umol/l aka 4.9 - 5 mg/dl.

if your system is functioning at all like mine was, correcting low zinc might boost serum uric acid and reduce elevated urea (and presumably elevated ammonia too). careful food choices and combinations are key to retaining zinc, especially if animal sources are not part of the picture. i personally can't get it right without a supplement. i just can't stomach oysters, and there are the pcbs to consider in those as well.
Also HbA1C: 4.8 (4.8-5.9 %)
glycose : 71 (70-110 mg/dl)
i don't know if it helps
not right at the moment
do you believe if zinc,copper,ferritin etc will fixed, ms worsening could be reversed a little? Do you believe high doses of vit d3 and less nutrients damaged my body?can i reverse that?
sorry for my english
i can't be sure what will happen in your case but in my own, for sure when i identify nutrient issues and work to correct any problems, things improve. when i do supplements wrong, i make things worse. eg vitamin d3 at 4000IU/d made my magnesium status so bad i literally thought i was going to die.
re the reversal question, it depends. in my case i let some things go on for too long and ended up with some permanent damage. in other shorter term situations, my body was forgiving and i was able to turn things around. do what you can, and hope for the best.

no apologies for english! what is your first language? i'll try yours and you can have a laugh ;)
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!

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