Young with MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Qlah8
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Young with MS?

Post by Qlah8 » Sat Dec 06, 2014 1:52 pm

Hey everyone, I'm a 19 year old male and I'm a little worried about my situation.
I have an appointment with a neurologist in 2 weeks, but i'm extremely worried and need to get some answers until I see him.
Everything started a year ago, and went downhill from there, more and more symptoms began to show with time, like:

-Chronic fatigue
-Numbness in legs and hands
-Hard time walking, getting exhausted really fast.
-Dizziness and headaches
-Loss of vision, I can barely see anything on my left eye, bad focus on both eyes, pain when moving eyes.
-Weird electric shocks feeling on back, arms and legs.
-Panic attacks, depression, stress.
-Bad memory, trouble speaking, keep forgetting things, mumbling.
-Erectile dysfunction.

At first, I blamed it all on a possible heart disease and spent about 2 months seeing a cardiologist and going through several test, they all came great, my heart is in excellent condition.
I have only recently started reading about MS, because my mom has it for approx 10 years now. she's handicapped, been through every possible treatment and yet nothing helped her. (was discovered too late)
The symptoms come and go, except the fatigue and eye strain which happens every day, and they get stronger on hot days.
In the summer, I could not survive staying up for more than 4 hours without resting, I used to come home after 7 work hours and sleep until the next day.
When winter came, I started feeling better, but the symptoms are still there.

What are the chances that I have MS?
What should I request from the neurologist when I see him?

Thanks in advance.

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lyndacarol
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Re: Young with MS?

Post by lyndacarol » Sat Dec 06, 2014 2:30 pm

Qlah8 wrote:I'm a 19 year old male and I'm a little worried about my situation.
I have an appointment with a neurologist in 2 weeks, but i'm extremely worried and need to get some answers until I see him.
Everything started a year ago, and went downhill from there, more and more symptoms began to show with time, like:

-Chronic fatigue
-Numbness in legs and hands
-Hard time walking, getting exhausted really fast.
-Dizziness and headaches
-Loss of vision, I can barely see anything on my left eye, bad focus on both eyes, pain when moving eyes.
-Weird electric shocks feeling on back, arms and legs.
-Panic attacks, depression, stress.
-Bad memory, trouble speaking, keep forgetting things, mumbling.
-Erectile dysfunction.

At first, I blamed it all on a possible heart disease and spent about 2 months seeing a cardiologist and going through several test, they all came great, my heart is in excellent condition.
I have only recently started reading about MS, because my mom has it for approx 10 years now. she's handicapped, been through every possible treatment and yet nothing helped her. (was discovered too late)
The symptoms come and go, except the fatigue and eye strain which happens every day, and they get stronger on hot days.
In the summer, I could not survive staying up for more than 4 hours without resting, I used to come home after 7 work hours and sleep until the next day.
When winter came, I started feeling better, but the symptoms are still there.

What are the chances that I have MS?
What should I request from the neurologist when I see him?
Hi and welcome to ThisIsMS, Qlah8.

I have no medical background, but here are my ideas on your two questions:
What are the chances that I have MS?
What should I request from the neurologist when I see him?
#1. Your symptoms are shared by MS and many other conditions. MS is a diagnosis of exclusion – the other more likely conditions must be ruled out first before the diagnosis of MS can be made. ALL the symptoms you list are consistent with a B12 deficiency. Any person at any age (even 19) can develop a vitamin B12 deficiency.

#2. In my opinion, thorough screening for a possible B12 deficiency should be the first step ordered by your neurologist (or GP, or any physician you know) – hand him the list of symptoms you have shown us. A serum B12 test alone is not adequate to determine a B12 deficiency; a serum homocysteine test, a serum or urinary methylmalonic acid test, and possibly even a HoloTranscobalamin test are required to identify a deficiency in the blood. Do not take a vitamin B supplement before testing because this will skew the results. Request your own copy of any test results.

Even if there is no deficiency in the blood, there can still be a deficiency in the tissues.

Youarethecure
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Re: Young with MS?

Post by Youarethecure » Sat Dec 06, 2014 4:10 pm

I was 19 when I had optic neuritis for the first time. I was not diagnosed till early this year when I had optic neuritis of the other eye along with MANY other symptoms. I was 24 at the time it all started last year.

My first question was going to be if you have any relatives with ms but I see that you do.

You seem to know your way around MS. So I hope you know this is not the end of the world if it is MS. Like you said about your mother, they found out too late. Obviously for you and myself, it is GREAT to catch it early. I honestly am healthier, stronger, more fit, and feel better than I have in my life.... in between flare ups of course lol.

But It could be many many many other things and not MS.

Do you feel like the symptoms have slowly been getting worse? gotten better? stayed the same?

Describe your symptoms to your doctor, and I am sure they will take it from there. They will probably want an MRI with and without contrast. But there are also many other things that need to be ruled out first.

I hope the best for you,

Chris

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leetz
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Re: Young with MS?

Post by leetz » Sat Dec 06, 2014 7:48 pm

Trust your body... see a Neurologist that can offer you the proper avenues for diagnosis...glad you joined...god bless you
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Qlah8
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Re: Young with MS?

Post by Qlah8 » Sat Dec 13, 2014 3:10 am

I can not see the neurologist for another 2 months since my appointment has been canceled, I seriously consider hospitalizing myself and pay whatever it's going to cost, just so I can get myself checked.
My vision keeps getting worse, stress got extremely worse, I went to the local drug store and saw a "stress formula" which is a combination of B+C complex. I guess i'm gonna try it cause I have nothing to lose. Maybe my nerve system got damaged because of the huge stress I dealt with everyday for the past 2 years.
I've been taking B12 pills every day for the past 4 days, I'm not sure if i'm feeling better or not.

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jimmylegs
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Re: Young with MS?

Post by jimmylegs » Sat Dec 13, 2014 6:09 am

hi and welcome q :)

sorry to hear you're going through a tough time.

if you don't mind, i have a few questions. may i ask if your day to day diet and lifestyle have been what you would consider healthy, over the time period you have noticed these symptoms developing? where do you sit on the sedentary - athletic spectrum? what kind of fluids do you consume daily?

depending on what your routine is like to date, there may be some things you can do to clear up some of those symptoms. that way, when you do take a symptom list to the doc, you can know you're dealing only with true neurological stuff, not concurrent nutritional stuff. nutrition is an issue for many ms patients - if you are interested in pursuing health, obviously diet and lifestyle are two pieces over which you have a huge amount of control, and power to make sure you do not match the profile of a typical ms patient.

looking forward to hearing back from you :) again, welcome to the forum.
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Qlah8
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Re: Young with MS?

Post by Qlah8 » Sat Dec 13, 2014 7:06 am

Thank you.
I used to run alot, 2km~ at a time, however lately it's very hard for me to run, I get a pinching pain on my legs, and my legs get numb after the exercise, so I do a 30 minute walk 2 or 3 times a week.
I also changed my diet, I started eating more because I was clearly not eating enough, i'm eating more fruits like oranges, bananas and apples, and salad with flaxseeds almost every day.
I stopped drinking sugary drinks completely. I only drink water and tea on the mornings/evenings. Sometimes I drink beer, which doesn't affect me very well but I don't drink that too often.
Since changing my diet I feel a little bit more energized and less tired, but there are good times and bad times, I can feel terrible for 2 weeks, and then feel normal for 2 weeks.

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jimmylegs
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Re: Young with MS?

Post by jimmylegs » Sat Dec 13, 2014 8:05 am

All right glad to hear the changes you have made so far are helping at least a bit.

I'm going to provide some links to relevant previous discussion here at TiMS.

first, a search which shows the number of times we've had related inquiries here over the last year (you're the third in this month alone):
http://www.thisisms.com/forum/search.ph ... mit=Search

this is a specific post with some good background info for active people http://www.thisisms.com/forum/undiagnos ... ml#p229973

based on the relevant science, you'll perhaps want to investigate whether your daily intakes are meeting the minimums for iron, zinc, copper, calcium, magnesium, vitamin b12, folate, and vitamin E. these are all nutrients of concern not only for athletes, but for ms patients too. one significant difference is that while athletes are likely to have poor iron status, ms patients deal with iron regulation issues. some tims members also have to deal with hereditary iron overload. so these are all nuances to be aware of.

based on your symptom list, and to make the research and work a little easier, you might want to zero in on one or two of iron, zinc, or magnesium first. working on those with diet does not mean you'll be ignoring the others. when you work on *dietary* approaches for one or two essential nutrients, you'll naturally be dealing with the others at the same time. if you haven't checked it out before, whfoods is an excellent resource for calculating your daily intake of various essential nutrients, eg magnesium here: http://www.whfoods.com/genpage.php?tnam ... #foodchart
although i can't point you to anything specific, i have started to hear about some decent apps for tracking daily nutrient intakes. you might consider looking into that idea.

on a related note, and this is about optimizing nutrient *retention*, may i ask how often you consume wheat or products made from wheat? also legumes, or products made from legumes?

as for your symptoms, and what we know about athletic nutrient depletion, i would expect that you could see improvement in your symptoms with some adjustments to your daily routine. i'm encouraged to see that you have already taken positive steps in the right direction :) in case you are interested, i've placed *some* suspect nutrients next to each of your symptoms below.

-Chronic fatigue - iron and magnesium
-Numbness in legs and hands - iron and magnesium, possibly b vitamins
-Hard time walking, getting exhausted really fast. - iron and magnesium
-Dizziness and headaches - magnesium and zinc
-Loss of vision, I can barely see anything on my left eye, bad focus on both eyes, pain when moving eyes. - zinc
-Weird electric shocks feeling on back, arms and legs. - possibly b vitamins
-Panic attacks, depression, stress. - magnesium and zinc
-Bad memory, trouble speaking, keep forgetting things, mumbling. - zinc and b vitamins
-Erectile dysfunction.- zinc

i am encountering these athlete/nutrition issues more and more over time. one of my old work friends had serious health concerns and because we were so close in her case, i actually have a copy of her bloodwork that she had done. all the tests that i had her ask for for showed low normal (where we'd expected them to be, given her issues). we set her up with a diet/supplement regimen, and all her issues cleared up. the doc said it was a coincidence.

if you decide to pursue testing, this post from last weekend will link you up bloodwork discussion so that you can get an idea of where patient status is usualy at in relation to healthy controls: http://www.thisisms.com/forum/undiagnos ... ml#p230819

i haven't touched on healthy fat at all here so far. so my next question is, how often do you consume seafood? what kind? besides flax, do you have anything specific that you're doing to make sure your omega 3 to omega 6 ratio is in good shape?
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take control of your own health.
pursue optimal self care, with or without a diagnosis.

Qlah8
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Re: Young with MS?

Post by Qlah8 » Sat Dec 13, 2014 11:19 am

Thank you for putting the time to write all this, I really appreciate it!
I consume quite a lot of wheat and products made from wheat, mainly bread. I get free sandwiches at work, so I eat at least 2 every day.
Legumes.. rarely.
I'm unfamiliar with 95% of the foods in the food chart you mentioned, I guess that's bad.
What did you mean by "zero in on one or two or iron, zinc, or magnesium first." ?
I will try to take another blood test this week and bring back the results. I took so many but my doctor always tells me they are normal.
About healthy fat, I don't consume flax seeds that often, and I don't eat much seafood at all. I eat tuna from a can maybe once or twice per week.

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jimmylegs
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Re: Young with MS?

Post by jimmylegs » Sat Dec 13, 2014 2:57 pm

no problem happy to help :)

wheat is a gluten grain, and legumes are high in phytates. both of these food components impair nutrient absorption, so for example the more a person's diet emphasizes bread, pasta, or similar, the less benefit they'll be able to get from the relatively smaller proportion of other healthy foods.

basically, it's good to hear re the wheat - it means you can probably improve your nutrient retention quite a bit simply by reallocating some of your bread intake to other whole grain options like brown rice, quinoa and oats. they won't be free work sandwiches, but they shouldn't cost you the earth either :) just a bit more planning and prep time. so, basically, good news. side story: a previous coworker of mine in his early 20s complained to me of some health issues and because of his dietary dynamics i suggested he limit himself to one slice of bread or equivalent *every other day*. he protested, wanting to know how he should fill up. but we eventually worked it out to his satisfaction, with alternatives that he liked but hadn't consumed as often.

ok so where i said zero in on "one or two OF iron, zinc, or magnesium first". the idea was that you could pick two out of three. basically so that your head doesn't explode trying to figure out all those essential nutrients flagged in the research, all at once. it would be good to choose magnesium, and either one of zinc or iron (because zinc and iron are often found in similar foods).

but let's say we just pick even one. if we choose just iron to start, you'd just track everything you eat, and add up how much iron you get over the course of the day. you can just put whfoods and whatever food into google, and you'll get useful results with mgs per serving. you just have to kind of have an idea of the size of your specific serving.
sample search: https://www.google.ca/?gws_rd=ssl#q=whfoods+egg
sample whfoods egg info page: http://www.whfoods.com/genpage.php?tnam ... ce&dbid=92
which shows an egg doesn't make a contribution to your daily iron intake. so you go on to the next thing. and so on and so on :)

at the end of the day, if your iron intake is not high enough, you can use the whfoods resource to choose high iron foods to add to your daily routine. again you just google whfoods iron: https://www.google.ca/?gws_rd=ssl#q=whfoods+iron
then go to the iron page http://www.whfoods.com/genpage.php?tnam ... nt&dbid=70
and from there you go to the nutrient rating chart http://www.whfoods.com/genpage.php?tnam ... #foodchart
which gives you the amount of iron per serving for a bunch of healthy options.
you'll notice they don't include animal sources as often at whfoods, so you can also run searches using other resources, like healthaliciousness.com eg:
https://www.google.ca/?gws_rd=ssl#q=hea ... sness+iron
http://www.healthaliciousness.com/artic ... f-iron.php
shellfish and liver are potent iron sources. by comparison, beef and lamb containing only about 1/5th of the iron per serving.

at the healthaliciousness link, you might notice that beef and spinach are roughly equivalent, but we also have to consider:
iron from animal products (heme iron) is more absorbable. iron from plant products (non-heme iron) is less absorbable. you can combine iron rich foods with vit C rich foods to optimize absorption. i try to be sure at least to add a vit C food when i'm having a plant source of iron. eg combining red pepper with spinach - whenever i make eggs for breakfast, i mix in spinach and red pepper. fyi, red pepper, strawberries and broccoli are much higher in vit C than oranges.

so, that's how you figure out your iron.

here's one place you can look up recommended daily amounts for each of the various essential elements:
http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php
consider the RDA an absolute minimum for *maintenance*. if your levels are low, you need to aim higher, up to but not exceeding the UL (upper limit).

so once all that's done, later you can do the same thing for mag. and then zinc.
by the time you've made changes that influence mag and iron, you might not have that much more to do by the time you get to zinc. and gradually over time you can work on the rest of the nutrients of concern for athletes (and ms patients, and chronic disease patients in general).

cutting back on wheat will be a big factor in helping you hang onto the nutrients you can gain from adding new, high nutrient density foods to your day to day routine :)

if you do go for bloodwork, you probably already know they don't usually test for many nutrients. the reason for this is because they are so often 'normal' (as your doc has noted). but, sick people's levels tend to be low normal, and healthy ppl's levels tend to be high normal (although of course you can have people that are too high in a nutrient, but that is more often inadvertent and linked to intentional or unintentional supplementation, eg excess zinc from denture cream).
i'll be happy to look at results if you can get any of the ones that are particularly relevant to athletes. if you can get serum ferritin (your iron stores), serum magnesium, serum zinc, and serum b12, that will be an excellent start.

re healthy fats, here's the google search for whfoods omega 3: https://www.google.ca/?gws_rd=ssl#q=whfoods+omega+3
and the associated nutrient rating chart for some options to consider: http://www.whfoods.com/genpage.php?tnam ... #foodchart
more omega 3 options: http://www.healthaliciousness.com/artic ... -foods.php

if you were to make a trail mix that contained walnuts that could help. if you can alternate between tinned tuna and tinned salmon, that might work too :)

lots to do, lots of options for improvement :D

edit: i just had salmon, kale, peas and potato for dinner - super tasty! :D
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Re: Young with MS?

Post by ElliotB » Sun Dec 14, 2014 6:53 am

"I consume quite a lot of wheat and products made from wheat, mainly bread."

I suggest you do some research on wheat. You may be surprised at what you discover.

"I'm eating more fruits like oranges, bananas and apples... I stopped drinking sugary drinks completely."


An orange has 9 grams of sugar. A banana has 14 grams. An apple has 19 grams. Sugar is sugar, regardless of its source. Many 'experts' suggest sugar is not necessarily a good food to be consumed by anyone, let alone someone with MS.

You may find this article about orange juice interesting:

http://www.foodrenegade.com/secret-ingr ... nge-juice/


I suggest you check out the various MS diets (there is great info right here on TIMS) and follow one (which ever one you feel is best for you):

http://www.thisisms.com/forum/diet-f9/

T

All the MS diets seem to work for some but not everyone. Odd isn't it? And some are so very different from others. Yet they all seem to work for some.

Youarethecure
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Re: Young with MS?

Post by Youarethecure » Sun Dec 14, 2014 9:45 am

Yeah people do not realize the whole sugar thing with fruits lol.

My friend who was recently diagnosed with diabetes switched from soda to juices and didn't understand why his sugar was still high lol. My parents as well, they keep trying to get me to "juice" with them. But they do a lot fruits and it is nothing but sugar haha.

I personally don't find that odd that some things work for some but not others.... Not just diet, medication is the same way with MS. That just makes so much sense when it comes to MS because the disease is very different from person to person. So why would "the cure" be the same from person to person? That is the same reason I do not think there is an underlying "cause" of MS with every single person that we share. It seems that different things trigger the response from our bodies.

But hey what do I know hahaha.

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jimmylegs
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Re: Young with MS?

Post by jimmylegs » Sun Dec 14, 2014 10:03 am

there are certainly lots of interesting things to be learned about bread - for instance sourdough and/or sprouted breads will have lower gluten content than more mainstream types. personally i keep a loaf of sprouted 9 grain rye in the freezer - i don't like rye bread in general but this one is more like normal bread. over time, my consumption of bread has dropped more and more. mind you, i just ate a piece of homemade coffee cake, so, you win some you lose some ;)

based on your actual consumption each day, you may or may not be getting excessive amounts of sugar from fruit.

there's a good tool called the inflammation rating system, which is affected to a large extent by the fat sugar and simple carb content of your food choices. it's another layer of tracking to consider at some point.

to some extent, working on nutrient density will put you on the right path ahead of time. for instance if you use red pepper, strawberries and broccoli for vit c rather than oranges, you will end up with a far better inflammation rating.

briefly, the idea is that each food has a score and your want your total overall score each day to be over 100.

red pep, broc, strawbs, AND oranges all have positive scores, but orange's is the lowest (5) while the others are in the double digits. for comparison a serving of baked salmon can be as high as +850, while baked goods, sugary and high fat foods usually have negative scores. interestingly, the worst score i found today was for turkey bacon (-206!), which is apparently almost 6 times more inflammatory than regular old fried bacon (-36). who knew.

for now, just keep a diet diary and work on one or two things. keep it simple, and work on the bigger picture at your own pace, whatever that happens to be :)

as for diets, i've said it before and i'll say it again - there are lots of ways people can end up with the nutrient profile of an ms patient. the route each person takes to illness, to some extent can dictate the route back. logically if you are sick, it makes sense to change up your status quo. if a person's diet has been limited in a particular way, the 'right' diet for them will bring them into a more balanced routine. so in my case, having gotten sick as a vegan, one set of diet suggestions i received (from a naturopath with ms) included avoiding red meat, dairy, and eggs, which made no sense since i hadn't had those in 15 yrs prior. another ms regimen i found promoted a high protein diet with '2-3 eggs for breakfast'. that one seemed more likely to correct any imbalance associated with my previously vegan routine, so i went the high protein route.
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Re: Young with MS?

Post by NHE » Mon Dec 15, 2014 3:52 am

ElliotB wrote:"I'm eating more fruits like oranges, bananas and apples... I stopped drinking sugary drinks completely."


An orange has 9 grams of sugar. A banana has 14 grams. An apple has 19 grams. Sugar is sugar, regardless of its source. Many 'experts' suggest sugar is not necessarily a good food to be consumed by anyone, let alone someone with MS.

There's a big difference between whole fruit and fruit juice. Whole fruit has fiber and many more beneficial phytochemicals. It's easy to drink the juice from 6 oranges in just a few quick gulps. However, try eating 6 whole oranges in one sitting...

See Dr. Robert Lustig's presentation "Sugar: The Bitter Truth."

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jimmylegs
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Re: Young with MS?

Post by jimmylegs » Mon Dec 15, 2014 3:03 pm

q you mentioned you only drink water and tea, not juice, so i'm not sure if the orange *juice* aside is relevant for you specifically. but, for anyone else reading who might be interested, the inflammation factor approach red flags juice as well. can't remember where this particular quote comes from, but someone somewhere asked a health expert about fruit juice and the reply was 'eat fruit, drink water'. sounds to me like you're on the right track. in time you might mix up the produce variety a bit, but switching to whole fruit, plus water and tea for the majority of your beverages, is an excellent step :)
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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