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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Re: Young with MS?

Post by Qlah8 »

I have noticed that I wasn't reaching even half of the daily recommended amounts of zinc, magnesium and iron, so to get more of those I started eating more greens and seeds (pumpkin and sunflower).
Also I switched from white bread to rye bread.
I don't really feel a difference, and I developed another symptom, I smell and breathe iron, I can't get this smell out of my system. It attacks me everyday for atleast 4 hours.
I hope that with time I will start feeling better, and get to see a neurologist soon.
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jimmylegs
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Re: Young with MS?

Post by jimmylegs »

hi! glad to hear that you started tracking and found some things to work on :) really excellent that you have added more greens and seeds to your routine!

about the switch to rye bread - what brand did you choose, iima? were you able to find a sourdough or sprouted version?

re 'smell and breathe iron' - can you clarify? do you feel like it is a symptom of a transient smell and taste disorder? or more of an actual smell coming from your body and mouth? i have some ideas as to what might be going on, but wouldn't want to speculate too much until i know what you mean specifically :)

with dietary approaches alone, i wouldn't expect any *major* differences to be felt in quite such a short time. making sure you are getting daily dietary minimums is nothing but smart, and is an excellent strategy to apply for the long term (likely with some adjustments over time as you learn more).

if you want to go beyond diet you might also consider a high quality daily active adult multivitamin/mineral.

personally, when i notice the specific symptom-related effects of nutrient changes over the course of a few days or hours, it's generally because i did something with supplements. in your case, especially since you don't yet have a specific diagnosis, for anything supplemental beyond a high quality multi, it would be by far the safest plan to get a handful of nutrient level tests done. if you do pursue that line of inquiry there's tons of information available here, to help you evaluate your results (always get your own copy!) and take appropriate next steps :)
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Qlah8
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Re: Young with MS?

Post by Qlah8 »

I got an appointment with a neurologist in 3 weeks, finally. i'm lucky because my previous appointment was supposed to be at Feb 1st.
Yes it feels like a taste disorder, it feels like I ate metal or something, I can feel it when I breath through both my mouth and my nose. I tried drinking something sweet to make it go but nothing helped. today the taste was so strong that I nearly puked. :oops:
I will get some multivitamins, for now I'm taking B complex, C complex, B12 pill and 1 omega-3 pill every day.
thank you for all your help!
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jimmylegs
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Re: Young with MS?

Post by jimmylegs »

hey good news re the appointment getting moved up :) can be pretty stressful knowing you have a long wait ahead.

OK metallic taste, that is the kind of thing you can work with. you said you notice it for about four hours a day. is that usually in the morning, afternoon, or evening? do you know approximately when you realized you had this new symptom?

re the help, you're very welcome :)
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Qlah8
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Re: Young with MS?

Post by Qlah8 »

It happened to me before, but not more than once a month.. Now it's happening really often, a few times per week.
I mostly experience this in the morning.
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jimmylegs
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Re: Young with MS?

Post by jimmylegs »

hmm interesting. so which of the recent changes you have made, would you say were done *before* this increased metallic flavour issue appeared?

i can't really relate specifically to the taste in the mouth, but for sure i've noticed odd side effects from specific supplements, at times. for example at one time i got an annoying 'phantom itch' from b complex. it was a new product i was trying out, it turned out to have higher folic acid content than i was used to. i went for testing and my folic acid levels were sky high - my system couldn't handle it for some reason. i backed off on that product and my phantom itch went away. later, after correcting a bunch of other levels, i found i was able to take a similar b complex without any side effects.

the other time i had a weird supplement side effect, was when using this one expensive multivit/min. i noticed my feet were STANKY and wasnt sure why. when i ran out of that product, suddenly my socks smelled like clean laundry at the end of exactly the same long work day.

perhaps you could experiment with rotating your new supplement regimen. try taking a break from each for a week at a time, see if there is any improvement :)

i was still wondering about the bread product you chose as well, if you don't mind sharing :D rye is a good choice in terms of iron - even better if you managed to find a sourdough or sprouted variety :)
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Qlah8
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Re: Young with MS?

Post by Qlah8 »

The phantom itch was probably caused by niacin (b3). It's called 'Niacin Flash', I was reading about B vitamins earlier :)
I'm not sure about the rye bread, we buy it from a local bakery called 'leebo', don't think it exists outside my country.
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jimmylegs
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Re: Young with MS?

Post by jimmylegs »

nope, totally a different thing. niacin flush is acute, and generally a rather big deal (if your fatty acid levels are high enough for you to actually register a niacin flush reaction that is)
the phantom itch was mild and chronic and annoyingly unscratchable. i suspected the new b complex with extra folic acid, specifically had my folic acid levels tested, and they were through the roof. stopped the high folic b complex and went back to a normal one, no problem thereafter. but, as i said, it was an issue with some other exacerbating deficiency. nowadays, after having fixed so many different issues, i seem to have done something right and don't react to folic acid like that any more. whew :)

re the rye bread - it is still a gluten grain unfortunately. fine to have in the mix, but you might do better to diversify your carb servings across a wider spectrum of options, including gluten free whole grains like oats, brown rice, quinoa and so on, as well as (if possible) breads that have been prepared in ways that reduce gluten content- such as sourdough and/or breads that use sprouted flour, like this
http://www.foodforlife.com/about_us/ezekiel-49
or this
http://www.stonemillbakehouse.com/010~E ... Rye_Bread/
hopefully you can track down something similar locally :)
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Qlah8
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Re: Young with MS?

Post by Qlah8 »

Hey.. So it's been like a month and a half, symptoms didn't get better but only worse after dietary changes. I've been checked by a neurologist, he looked into my eyes with a flash light, took a little sort of hammer and started knocking on legs/arms. He said that there is nothing wrong with me but I have a chance of 1/10 to develop MS because of my mother.
Its been over a month since that and the symptoms have gotten worse, I now feel like itching and needle pain on specific spots on my feet and legs (same spots every time) and it feels like my legs are on fire but when touching them they're actually cold.
Its also harder for me to walk than it was when I posted this thread.
What should I do?
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jimmylegs
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Re: Young with MS?

Post by jimmylegs »

hey there, sorry to hear :(

whenever a regimen doesn't work, it helps to look at details and see if anything went amiss... what has your routine been like for food and fluids over the last week?

the next step, when possible, is to get some specific bloodwork done. if memory serves that's not necessarily an option for you. are there naturopathic specialists in your area, that will order bloodwork for the kind of preventative measures less often evaluated by doctors? can you ask your doc for a referral to a diet and nutrition specialist?

when you know that your regimen is doing the right things for your system through testing, and your bloodwork is a perfect match for a healthy person, and you still have symptoms that a general doc can't figure out a cause for, then it is time to ask for referrals to still other kinds of specialists. somebody will know what is going on!
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ElliotB
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Re: Young with MS?

Post by ElliotB »

"What should I do?"

Go see another doctor, a Neurologist that specializes in MS. My 1st doctor looked at my MRI, knew of MS in my family history, did similar tests to what you had done, and concluded with certainty that I did not have MS. I went to a MS specialist who looked at the exact same MRI and was able to diagnose me. She showed me plaques which were quite visible. How the first Neurologist missed them is beyond me. I guess he did not know what to look for.

Whether you have MS or something else, you need to figure out what is going on.
younglady

Re: Young with MS?

Post by younglady »

Go see another doctor. I cannot tell you how many neurologists have told me "Oh you're fine." "Oh the dizziness is just allergies." W/e w/e. I started experiencing my debilitating symptoms (similar to yours) at 18. I am twenty and am just now getting the tests done that I needed. Took me going to Mayo to get someone to actually test my body for nerve damage. Sheesh. Sorry you're going through all this, trust me, I know what it's like.
RuralLaundry
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Re: Young with MS?

Post by RuralLaundry »

younglady wrote:Go see another doctor. I cannot tell you how many neurologists have told me "Oh you're fine." "Oh the dizziness is just allergies." W/e w/e. I started experiencing my debilitating symptoms (similar to yours) at 18. I am twenty and am just now getting the tests done that I needed. Took me going to Mayo to get someone to actually test my body for nerve damage. Sheesh. Sorry you're going through all this, trust me, I know what it's like.
I agree with this completely, if the doctor hasn't ordered an MRI and blood work with those symptoms I would be very concerned. Several diseases with similar symptoms can be ruled out with blood tests and some others with MRI. With the fast pace of the symptoms I would be pushing hard to get to a MS specialist as others have said.
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