27yrs

A forum to talk about the general challenges of daily life with MS.
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jimmylegs
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Re: 27yrs

Post by jimmylegs » Sat May 25, 2019 3:29 pm

<hijack>side question @elliot - is your serum or plasma zinc high normal? if you don' t know, it could be wise to rule that out as a potential source of anorexia

The role of the endogenous opiates in zinc deficiency anorexia
https://www.sciencedirect.com/science/a ... 848490266X
"Anorexia is a major symptom of zinc deficiency ... Recent studies have suggested an integral role for endogenous opiate peptides in appetite regulation. Dynorphin ... is a potent inducer of spontaneous feeding ... zinc deficient animals had lower levels of dynorphin in the hypothalamus than did ad lib fed animals"

Controlled trial of zinc supplementation in anorexia nervosa
https://onlinelibrary.wiley.com/doi/abs ... 0.CO;2-%23
"The rate of increase in BMI of the zinc supplemented group (n = 16) was twice that of the placebo group (n = 19)"

re the second abstract (and keeping in mind that careful food choices come first) i will note in passing that my memory was recently refreshed as to the particular benefit of zinc gluconate - among supplements studied it was shown to be least likely to be affected by cadmium contamination. can't recall the specific products compared - something to look up again in future.

cadmium made me think of smoking impacts on zinc:

Cadmium and Cadmium/Zinc Ratios and Tobacco-Related Morbidities
https://www.mdpi.com/1660-4601/14/10/1154

and once i was on the topic of smoking, it wasn't a long leap to alcohol impacts on zinc:

Zinc deficiency as a mediator of toxic effects of alcohol abuse
https://link.springer.com/article/10.10 ... 017-1584-y

</hijack>
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!

robbie
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Re: 27yrs

Post by robbie » Sat May 25, 2019 6:56 pm

My weight loss is from atrophy my appetite is mostly good.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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NHE
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Re: 27yrs

Post by NHE » Sun May 26, 2019 2:23 am

Hi Robbie,
Could one of the product listed here be of possible benefit for you?

Motorized Pedal Exercisers

Note that the Motomed company makes exercisers for people who are bed bound.

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jimmylegs
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Re: 27yrs

Post by jimmylegs » Sun May 26, 2019 3:54 am

i get your message, robbie - you are interested in commiseration not action items.
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!

robbie
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Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Sun May 26, 2019 5:51 am

My weight loss is from atrophy my appetite is mostly good. Like to talk with anyone who is also unable to transfer and bare your own weight, adds so many additional problems.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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jimmylegs
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Re: 27yrs

Post by jimmylegs » Sun May 26, 2019 5:55 am

i hear you. the post above was definitely an aside directed at elliot who specifically posted re poor appetite.
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!

robbie
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Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Sun May 26, 2019 6:05 am

I'm not interested in sympathy Jimmy I'm just interested in talking with someone with similar challenges. Not sure what you mean an aside directed at Elliot??
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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jimmylegs
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Re: 27yrs

Post by jimmylegs » Sun May 26, 2019 6:20 am

peace out :)
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: 27yrs

Post by ElliotB » Sun May 26, 2019 7:18 am

@ JL, my Zinc levels have always been in the normal range. Aside from taking a Zinc supplement daily, many of the foods I consume regularly are good sources of Zinc too. Not having an appetite is not normal obviously but I am learning to deal with it. It is not fun or easy :-(.


Robbie, you stated "My weight loss is from atrophy my appetite is mostly good."

What do you mean when you say your weight loss is due atrophy?

robbie
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Re: 27yrs

Post by robbie » Sun May 26, 2019 7:30 am

Muscle loss
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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jimmylegs
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Re: 27yrs

Post by jimmylegs » Sun May 26, 2019 9:38 am

@elliot

ok so in the context of poor appetite/intake overall, it is unknown whether total food, fluid, medication, supplemental form, timing and other combinations are resulting in high normal zinc. if you're comfortable with that, so be it.

New Insights on the Nutrition Status and Antioxidant Capacity in Multiple Sclerosis Patients (2019)
d/l fft: https://www.mdpi.com/2072-6643/11/2/427

Table 2. Daily consumption of 66 dietary items in MS patients vs. healthy controls and in severe vs. mild MS patients
Zinc (mg)
controls mean: 10.66
patients mean: 7.51
edss 0-3 mean: 7.68
edss 3.5+ mean: 7.20

Lower Serum Zinc Levels in Patients with Multiple Sclerosis Compared to Healthy Controls (2018)
d/l fft: https://www.mdpi.com/2072-6643/10/8/967

"MS patients had significantly lower mean (SD) zinc concentrations than HCs (12.5 (2.1) µmol/L vs. 14.6 (2.3) µmol/L, p < 0.001)."

surprise surprise, both patients' and controls' mean levels are 'normal' (for sure a bunch of the left tail of that patient group are not, mind you)...
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!

robbie
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Posts: 1296
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: 27yrs

Post by robbie » Sun May 26, 2019 4:19 pm

Will this make me walk again?
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

81Charger
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Re: 27yrs

Post by 81Charger » Mon May 27, 2019 7:36 am

I know the price tag is expensive (about $75,000 Canadian) but have you looked at stem cell treatment. If it's affordable for you I'd look into that.

ElliotB
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Re: 27yrs

Post by ElliotB » Mon May 27, 2019 7:54 am

"Will this make me walk again?"

People with advanced stages of MS are having some successes with a variety of different approaches, so there is always a chance. People who have been unable to walk are in some cases regaining the ability to walk. BUT there is no substitute or shortcut for the short and long term benefits to exercise and really, really good nutrition - both seem to be key components of reasonably successful treatment protocols for those who have shown improvements. Few will dispute their importance and benefits.

Easy? Absolutely not! But improvement is possible.
Last edited by ElliotB on Mon May 27, 2019 9:55 am, edited 2 times in total.

robbie
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Re: 27yrs

Post by robbie » Mon May 27, 2019 9:06 am

I've improved a lot over the years but never without the opposite, everyone's MS is so different. I totally agree everyone should eat right and exercise stay healthy,
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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