Does MS cause weight loss? Does anyone have this problem?

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Re: Does MS cause weight loss? Does anyone have this problem

Postby essence » Mon Jun 24, 2013 3:09 pm

I've gone from 6'1" 230 lbs, january 2013, to 182 lbs, right now I'm sitting at 192lbs. I can fluctuate 10-20 pounds up or down in a week, and usually do so.

I feel like drenman about the people saying I look great compared to back around Christmas or early 2013 when i was about 235 lbs, well my secret is the same as yours drenman, its not a fun way to lose weight,
played hockey 10 years, baseball on and off for 17 years, skateboarded competitively for over 10 years approx 12 years.
landscaped for 5 years, building operator in charge of 43+ properties in toronto for a year, and most recently demo/reno of houses, tearing out old interior and updating/upgrading.

I've been off work for 8 or 9 weeks now, I think this is my 9th



Now my day consists of pretty much nothing all my energy is spent fighting pain and emotion from the pain and yes it takes every ounce of energy to do anything



none of my clothes fit now their all too big, I'm 25 years old and all my friends around me are in their physical prime, and they refer to me as "Old Man" I know its a joke and to just brush it off, but it just reminds me of my situation every time..

I'm still undiagnosed,

I really miss the days where I could skateboard 6-10 hours a day on top of full time school and not even be tired. Now I walk downstairs to do ONE thing like retrieve a cell phone charger to charge my phone, and it takes me 10 minutes to do, because by the time I get down 14 stairs I've forgotten what i went down for so i look around untill i remember, and end up getting side tracked doing other things often coming back upstairs with out what i went down for..

another thing i miss too is being sexually active, now things just don't work right down there in the nether region, I didnt have the time for a relationship before between working long weeks, and just having casual girl friends that i would hang out with on weekends.

now i cant have casual girl friends, because of the sex issue.. and now that i have time for a relationship, I dont really feel as desirable, cant even have a hot shower, and everytime i sleep longer than 3 or 4 hours IF i am able to, I urinate my bed every single time... so i just stay away from girls now at least ones i would have romantic tendencies with.

Sorry i digress

But since all this I do feel my weight and appetite has decreased. sometimes i can eat a good amount, most of the time though i have troubles eating much..

trying to incorporate better diet and supplements, just have 0$ right now, I've spent all my savings on med's and testing, and food, I cant work
and since i dont have a diagnosis cant go on disability or get the right meds.

I look forward to the day i can work again!

Good luck all! cheers!
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Re: Does MS cause weight loss? Does anyone have this problem

Postby jimmylegs » Mon Jun 24, 2013 3:26 pm

the trouble 'down there' speaks to a zinc issue too, e, along with everything else. I know I started with magnesium for you, but now that we're talking weight loss and SD, the zinc comes into it for sure. you've already got the link with info and targets for that one so if you've had a serum zinc test great, and if not, put it on the list along with the serum magnesium test. they're both covered by ohip.
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Re: Does MS cause weight loss? Does anyone have this problem

Postby mmpetunia » Mon Jun 24, 2013 5:20 pm

i too lost quite a bit of weight after my dx. i'm down at least 15 lbs which puts me near underweight. i always assumed that i lost the weight because i changed my diet to gluten and dairy free. about 7 years ago i was actually overweight! i weighed 155. the weight came on rapidly and i had a VERY hard time working it off. i was working out for at least an hour 4 times a week and counting calories and still not losing more than a pound or two. my thyroid has always checked out fine. it took a fitness bootcamp to really start to make a difference in my weight and even then, i only lost about 10 lbs.

over the span of the last 5 years i have been pretty active commuting 30 miles a week by bike in addition to hiking, yoga, swimming, etc and have really dialed in my diet. it took 3 years to get rid of about 20 lbs and then the last 15 came off with virtually no effort after my dx 1.5 years ago. just before i was diagnosed, i wasn't all that active either since the PT and doc's put me on activity restriction. so, no gym and no vigorous exercise at all and the weight (the last 15 lbs) just fell off me. very strange.

maybe the difference is the diet, i have been reading a bit about how wheat affects glucose levels. i have also noticed as someone else mentioned that my appetite waxes and wanes quite a bit. some days i'm eating of out habit and will not feel hungry at all. other days my stomach is growling the instant i wake up and its like i can't get enough food. either way, despite almost no exercise at all i have maintained/ slowly lost weight eating whatever i wish (while avoiding dairy and gluten), with no restrictions on calories at all. as long as i maintain from here i won't worry but it does concern me just a bit. none of my clothes fit either.
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
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Re: Does MS cause weight loss? Does anyone have this problem

Postby jimmylegs » Mon Jun 24, 2013 5:59 pm

I used to run about 30lbs lighter when I was a vegan. but I also got diagnosed with ms ... so, deal with it i'm fat, for me. :D hehe
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Re: Does MS cause weight loss? Does anyone have this problem

Postby Annesse » Mon Jun 24, 2013 7:06 pm

Yes, MS can lead to weight loss. I have been making some posts recently on the lack of enzymes in MS called protease. You can trace every symptom and valid scientific finding in MS directly back to these missing enzymes-including weight loss.

Protease digest dietary proteins and release essential amino acids. Research shows that MS patients lack numerous essential amino acids, including the branched chain amino acids- leucine, isoleucine, and valine.

In the following study entitled “Plasma and cerebrospinal fluid tryptophan in multiple sclerosis and degenerative diseases” researchers found that MS patients had diminished levels of the essential amino acids tryptophan, leucine, isoleucine, valine, and phenylalanine. Leucine, isoleucine, and valine are the three branched chain amino acids (BCAAs). The term “branched chain” refers to their molecular structure. The BCAAs are used by the muscles for energy and in the regulation of protein synthesis.

J Neurol Neurosurg Psychiatry. 1979 July; 42(7): 640–641.

Plasma and cerebrospinal fluid tryptophan in multiple sclerosis and degenerative diseases.
F Monaco, S Fumero, A Mondino, and R Mutani

“…Tryptophan and competing neutral amino acid levels were found to be diminished in the plasma of patients with multiple sclerosis and degenerative diseases…Tryptophan, leucine, isoleucine, valine, tyrosine, and phenylalanine were all diminished in the plasma of patients with multiple sclerosis…”



Branched chain amino acids are needed to make protein. Branched chain amino acids
(BCAAs) make up approximately one-third of skeletal tissue. A deficiency
in BCAAs would lead to involuntary weight loss and skeletal muscle atrophy.

The following study states that “involuntary weight loss and skeletal muscle atrophy are generally characterized by altered BCAA
availability…”

Investigations of branched-chain amino acids
and their metabolites in animal models of cancer.
Baracos, V.E., M.L. Mackenzie. 2006. J Nutr. 136(1 Suppl):237S-42S.
“Many of the features of BCAA metabolism in the tumor-bearing
state are similar to the other disease states that feature involuntary
weight loss and skeletal muscle atrophy. These states are generally
characterized by altered BCAA availability (low BCAA intakes,
elevated rates of BCAA oxidation, and gluconeogenesis), which are
concurrent with activation of proteolysis and suppression of protein
synthesis in skeletal muscle and ultimately lead to erosion of lean
tissue mass. These features in turn imply BCAA deficiency compared
with whole-body requirements…”

As the previous study stated, altered BCAA availability can be due to
low BCAA intake or elevated rates of BCAA oxidation. If you lacked protease
and were unable to release essential amino acids, such as leucine,
valine, and isoleucine, this would result in a low BCAA intake.

Elevated levels of "tumor necrosis factor" would promote elevated rates
of BCAA oxidation. The study entitled “Activation of hepatic branchedchain
alpha-keto acid dehydrogenase complex by tumor factor-alpha in
rats” states, “Tumor necrosis factor-alpha (TNFalpha) promotes oxidation
of branched-chain amino acids (BCAA)” (Shiraki, 2005).

MS patients have elevated levels of tumor necrosis factor. Tumor necrosis factor is part of the body's inflammatory immune system. It is regulated by PROTEASE.

Here are a few studies on tumor necrosis factor and MS.

N Engl J Med. 1991 Aug 15;325(7):467-72.
Association between tumor necrosis factor-alpha and disease progression in patients with multiple sclerosis.
Sharief MK, Hentges R.

“Tumor necrosis factor-alpha (TNF-alpha), is a principal mediator of the inflammatory response and may be important in the pathogenesis and progression of multiple sclerosis, an inflammatory disease of the central nervous system…These data provide evidence of intrathecal synthesis of TNF-alpha in multiple sclerosis and suggest that the level of TNF-alpha in cerebrospinal fluid correlates with the severity and progression of the disease…”


Increased production of tumor necrosis factor α, and not of interferon γ, preceding disease activity in patients with multiple sclerosis.
Bob W. van Oosten, MD; Frederik Barkhof, MD; Petra E. T. Scholten; B. Mary E. von Blomberg, PhD; Herman J. Adèr, PhD; Chris H. Polman, MD
Arch Neurol. 1998;55(6):793-798. doi:10.1001/archneur.55.6.793.


“…The production of TNF-α, and not of IFN-γ, is significantly higher in patients with multiple sclerosis before exacerbations than in patients with stable disease…Our results are in line with most other studies that investigated a possible association of an increase of TNF-α production and MS activity…”
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Re: Does MS cause weight loss? Does anyone have this problem

Postby jimmylegs » Mon Jun 24, 2013 7:19 pm

Matrix metalloproteinases (MMPs) are zinc-dependent endopeptidases... The MMPs belong to a larger family of proteases
https://en.wikipedia.org/wiki/Matrix_metalloproteinase

Serum MMP-2 and MMP-9 are elevated in different multiple sclerosis subtypes
http://www.ncbi.nlm.nih.gov/pubmed/12620642

Der Einfluss von Zinkmangel auf die Wundheilung in der ECM des Rattendarms
http://link.springer.com/chapter/10.100 ... -71123-0_2
MMP 2, 9, and 13 measured significantly higher in the zinc deficient groups
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Re: Does MS cause weight loss? Does anyone have this problem

Postby Leonard » Tue Jun 25, 2013 2:09 am

I have lost 10-15% of my weight since diagnosis, in particular during the last few years.
Yet I eat big meals but have problems to maintain a healthy weight...

I think the problem for us is a mitochondrial energy failure; I also think this is the most common cause for the MS progression.
The cells are too slow to open up; the ion pump is slow and the equilibrium is insufficiently recharged giving motor problems; if too many cell gates/membranes get dysfunctional, the cells die and eventually the myeline and axons degenerate (here is also the Vit D relation fetus/mother and adolence determining the number of cellular gates).
Over and abover, weakened cells together with a broken BBB (due to many years of ccsvi) make cells vulnerable to virus and bacteria causing various sorts of RR effects.

The cause for the energy failure is the gut microbiota. Caveman in one of his last postings on general-discussion-f1/topic15188-420.html asked the question "...does this mean we are just a complex incubator for our microbiome, who's really calling the shots?" This is a good question.

The cause of our bad cellular feeding is the leaky gut; see the last few pages of the above link. The sensitivity of the cells to insulin and leptin will drop down significantly. In any event, it has been shows that the sensitivity of the insulin can be raised to normal levels (more than doubled) after a fecal transplantation; same for the leptin regulation. And micro-nutritions will be produced and absorbed again.

Diet is also a possibility to improve cellular health. Long chain molecules, regardless of whether they are from heavy fats or from complex carbohydrates are bad for your health; for affected patients, the microbiota breaks them down insufficiently and they then leak through the epitelial wall into the bloodstream surrounded by immune cells becasue they are correctly recognised as foreign. And that process is very damaging..
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Re: Does MS cause weight loss? Does anyone have this problem

Postby jimmylegs » Tue Jun 25, 2013 4:42 am

on zinc nutrition and the microbiota

Increased dietary zinc oxide changes the bacterial core and enterobacterial composition in the ileum of piglets
http://animalsci.highwire.org/content/89/8/2430.full
"This study was conducted to investigate the effects of increased dietary ZnO on the bacterial core and enterobacterial composition in the small intestine of piglets that were fed diets containing a total of 124 or 3,042 mg of Zn per kilogram of diet, respectively. ... Increased dietary ZnO led to an increase of less prominent species and, thus, had a major impact on the bacterial composition and diversity in piglets. This effect may help to stabilize the intestinal microbiota in the sensitive postweaning period. ... The dominating L. reuteri was influenced by greater ZnO supplementation, whereas the second most dominant L. amylovorus was not affected. Other lactobacilli, like L. salivarius, L. johnsonii, or L. helveticus, seemed to trade places in rank. The species specific response to ZnO supplementation may indicate different tolerance mechanisms against greater Zn inclusion; however, it could also be a result of interspecies competition. Considering the drastic increase in abundance of Weissella spp. and Leuconostoc spp., bacteriocin production may also have played a role. Like many other LAB, both genera are known to produce bacteriocins active against other LAB (Papathanasopoulos et al., 1997; Srionnual et al., 2007).
Sequences of the Clostridiales order in the bacterial core mainly consisted of Sarcina ventriculi, an acid-tolerant strict anaerobic species, found in the intestinal tract of piglets and other mammals (Crowther, 1971; Vatn et al., 2000; Thanantong et al., 2006). This species seemed to be very sensitive against ZnO or indirect modifications induced by increased dietary ZnO. The fact that S. ventriculi has also been found in the stomach of horses (Husted et al., 2010), lambs, dogs (Vatn et al., 2000), and free-living Colobus monkeys (Owaki et al., 1974), together with its ability to grow at low pH, indicates that this species may be autochthonous to the stomach of mammals.
An interesting result was observed for Enterobacteriaceae. Although not statistically significant, most detected species increased numerically in relative abundance because of increased dietary ZnO. It should be mentioned that sequence data were generated from a PCR using the same concentration of target DNA, and thus, some species with low relative abundance may have fallen below the detection limit because of the high abundance of a few dominant members. Nevertheless, enterobacteria seemingly gained colonization potential by increased dietary ZnO; substantially more enterobacterial species were detected in animals from the high dietary ZnO trial group. This is in agreement with a previous study by Højberg et al. (2005). Furthermore, a survey of Canadian pig farms revealed an increased presence of an enteropathogenic E. coli strain in farms using dietary greater dietary ZnO (Amezcua et al., 2008). Also, an increase in enterobacterial diversity was observed in a study with piglets (Katouli et al., 1999). These results indicate that dietary ZnO causes an enhanced colonization with enterobacteria in the small intestine of piglets. Consequently, the frequently observed diarrhea-reducing effect of ZnO may not be related to direct reducing effects on pathogenic E. coli, but rather to an increase of the enterobacterial group, which would increase competition among enterobacteria."

there.s LOADS of info here on zinc and 'leaky gut' aka intestinal permeability. examples:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17642-15.html#p174244
general-discussion-f1/topic6906.html#p54065

general search results on zinc + tight + junctions
search.php?keywords=%2Btight+%2Bjunction+%2Bzinc&terms=all&author=jimmylegs&sc=1&sf=all&sk=t&sd=d&sr=posts&st=0&ch=300&t=0&submit=Search

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17642-15.html#p174244
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Re: Does MS cause weight loss? Does anyone have this problem

Postby erinc14 » Tue Jun 25, 2013 8:34 am

when I was 20 I weighed 194 pounds . now i'm a quadriplegic and i'm lucky if i'm 95 pounds .
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Re: Does MS cause weight loss? Does anyone have this problem

Postby David1949 » Tue Jun 25, 2013 11:18 am

For me it's been weight gain. I think the problem is that I can no longer walk as much as I used to. All the weight gain has been in the belly.
For Info I'm 64 yrs old, dxed 17 years ago. I have ppms. I was always skinny when I was young.

I wish I could trade with you. I'll give the extra weight I've gained and take the 14 pounds you lost. :-)
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Re: Does MS cause weight loss? Does anyone have this problem

Postby erinc14 » Wed Jun 26, 2013 7:29 am

must be loss of muscle in my case.
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Re: Does MS cause weight loss? Does anyone have this problem

Postby chessie812 » Sun Aug 18, 2013 9:53 pm

I know this is an old post but I was watching a special about Richard Pryor last night and it was obvious that he was thin like a skeleton when he passed and I didn't remember that he had MS until they talked about it last night.

I used to be very, very thin when I was in my late teens and early 20s, but since 24 years old I gained weight rapidly. I am 5'5.5" and at my highest weight, was 250 lbs. I am now about 197. I needed to lose the weight and through the last 23 years have tried every diet imaginable. Now I don't diet and am losing steadily. I have now lost more weight than I did when I first tried Atkins. I never really thought that it might have anything to do with the MS until last night. I am pre-diabetic, I have Crohn's, had my thyroid removed in 2009, and have all sorts of other weird issues.

I was diagnosed with MS in December 2011. However, I had been trying to get the diagnosis since about 2007. I had my first "major" attack in 2009. I have no appetite most of the time and go all day until evening without eating and then I have to force myself to eat most evening.s. I start almost every day with a Coca-Cola and then I drink about 3 or 4 more Cokes during the day. I think if I were to cut out the Cokes, I would be losing even more weight. Everyone keeps asking what I am doing to lose the weight and I tell them I think it is because I sleep more from the fatigue and the 5,000 Iu's of Vitamin D that I take everyday (lack of sleep and stress cause belly fat). But then that isn't true either, because I have a lot of insomnia sometimes too.

I hope more people see this thread and respond. It is quite a coincidence that most of the respondents have lost weight vs. gaining weight. I thought since I spend most of everyday in bed that I would gain weight...
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Re: Does MS cause weight loss? Does anyone have this problem

Postby NHE » Mon Aug 19, 2013 12:13 am

As you're prediabetic, drinking 5 cokes per day is nearly 1 cup of sugar every day. This is not sustainable for the human body. I would try switching over to a sugar free beverage like unsweetened green tea. Not only will you benefit from the lack of sugar, but the antioxidants in green tea are healthy for you.
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Re: Does MS cause weight loss? Does anyone have this problem

Postby lyndacarol » Mon Aug 19, 2013 7:45 am

chessie812 wrote:I used to be very, very thin when I was in my late teens and early 20s, but since 24 years old I gained weight rapidly. I am 5'5.5" and at my highest weight, was 250 lbs. I am now about 197. I needed to lose the weight and through the last 23 years have tried every diet imaginable. Now I don't diet and am losing steadily. I have now lost more weight than I did when I first tried Atkins. I never really thought that it might have anything to do with the MS until last night. I am pre-diabetic, I have Crohn's, had my thyroid removed in 2009, and have all sorts of other weird issues.

I was diagnosed with MS in December 2011. However, I had been trying to get the diagnosis since about 2007. I had my first "major" attack in 2009. I have no appetite most of the time and go all day until evening without eating and then I have to force myself to eat most evening.s. I start almost every day with a Coca-Cola and then I drink about 3 or 4 more Cokes during the day. I think if I were to cut out the Cokes, I would be losing even more weight. Everyone keeps asking what I am doing to lose the weight and I tell them I think it is because I sleep more from the fatigue and the 5,000 Iu's of Vitamin D that I take everyday (lack of sleep and stress cause belly fat). But then that isn't true either, because I have a lot of insomnia sometimes too.

I hope more people see this thread and respond. It is quite a coincidence that most of the respondents have lost weight vs. gaining weight. I thought since I spend most of everyday in bed that I would gain weight...


Insulin is necessary to put on weight. I suspect that your pancreas was producing LOTS of insulin during those years you were gaining weight. Now, I suspect that the cells of your body are insulin resistant. Has your doctor investigated the possibility of insulin resistance (Insulin resistance is also part of type II diabetes.)

The sugar in regular Coca-Cola stimulates insulin production, but artificial sweeteners in diet coke are many times "sweeter" than sugar and actually cause MORE insulin to be produced.

I believe that most of my MS symptoms are due to the excess insulin my body produces.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Does MS cause weight loss? Does anyone have this problem

Postby amyjocaruso » Wed May 07, 2014 9:06 am

Hello. I have MS. I have lost 15 pounds in the past year, have been tested for "everything" under the sun. They have found I have protein deficiencies. I have a very good appetite. I have always been a small-framed person, tiny as a child, largest size I have ever worn as a woman (after having children) is a size 4. I wear a size 1 to size 2 now and do not like it at all. I would like some suggestions, advice, comments from anyone. My neurologist has such a bad bedside manner.
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