First Symptoms of MS - Help appreciated :)

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First Symptoms of MS - Help appreciated :)

Postby shinyredsparkles » Tue Feb 09, 2010 12:20 am

Hi everyone!
I'm hoping you guys can help me - I had an episode of optic neuritis last year, and was told that it was more than likely my first symptom of MS. Subsequent MRI's have shown however that I currently don't have MS, but I've been told that due to the optic neuritis I am still at a high risk for the next 15 years of developing MS.

I was just hoping you guys could help me with what I need to look out for - what were your first symptoms of MS? How did you know something was wrong? There's so much information on the internet it's hard to know what to believe sometimes :? I thought it might be more helpful to hear it from people first hand.

Thank you I really appreciate it :D
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Postby jimmylegs » Tue Feb 09, 2010 4:06 am

i was not someone who presented with optic neuritis. i had sensory loss and weaknesss. you know how they say carrots are good for your eyes. fyi zinc helps carrots (beta-carotene -> vitamin A) work on your eyes and zinc is typically low in ms patients.
if you got your level tested and came back here with the result including units, i could refer you to some abstracts of studies describing average zinc status in ms patients and average zinc status in healthy people. that way you'd know if you needed to take steps in the zinc department.
HTH!
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Postby scorpion » Tue Feb 09, 2010 7:00 am

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Postby lyndacarol » Tue Feb 09, 2010 6:50 pm

This is off-topic, I know; but since jimmylegs made this statement:
you know how they say carrots are good for your eyes.
I thought I would just add this bit of information that I gleaned from a recent Dr. Oz program.

He said that during World War II when radar had been invented the British did not want the Germans to know how they were able to spot incoming planes. The British had lots of carrots around, so they started the idea that eating carrots made for good eyesight. But Dr. Oz said that the carrots/eyesight idea is a myth! It is not true! Dr. Oz said that carrots are good basic vegetables, but not especially good for the eyes.

You learn something new every day.
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Postby jimmylegs » Tue Feb 09, 2010 7:09 pm

they do have beta-carotene which is a vit a precursor, and your eyes need vit a. so, i would not expect carrots to be the ONLY thing that's good for the eyes, but i can see why they would actually be good. that's funny about the radar thing though. it is true. lutein is another thing that's good for the eyes - from dark leafy greens. i have not really been eating enough of either lately LOL
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby L » Wed Feb 10, 2010 12:10 pm

Well, ShinyRedSparkles it might not be MS so let's hope that it isn't.

I had mild optic neuritis. So mild that doctors at Moorfield's Wye Hospital sent me away and said that I was fine. Which was a bit perplexing. That was my first symptom. Independently of that I found one night that I just wouldn't pee. That was even more perplexing because I had been drinking beer all night in the pub. I was fine the next day. Then my legs became so weak one day a year later whilst I was cycling to the chip shop as an errand for my gran (she used to love fish and chips). It was quite dangerous in fact. And that cleared up after half an hour and didn't reoccur for ages.

And all these things came back in a much milder form. Like I'd have heightened urgency to pee and a tiny bit of weakness in my legs (it was constant). I ignored them for a long time but eventually I had to visit my doctor. Anyway to cut a long story short (I'm getting a little carried away with my reminiscences) I thought I had three separate problems, the worst of which being a trapped nerve. Little did I know..

If you are worried about MS then start taking high dose vitamin D supplements. I take 10,000 international units (much stronger than tablets sold in supermarkets and so on) over the summer and 20,000 in winter. Google it, there are a few studies which demonstrate its effectiveness. It could well prevent any more bouts of MS. I have only been taking it since last summer although spring is the time when I get relapses..

Good luck!

PS If you happen to be from the UK, these can't be found in here, I order them from the US (vitamins are so much cheaper there although the postage can be expensive and avoid the over £50 customs fees!)
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Postby shinyredsparkles » Fri Feb 12, 2010 5:39 am

thanks jimmylegs - i didn't know about the zinc thing. i feel totally in the dark regarding everything at the moment and its frustrating. i quite literally woke up one morning with no sight in one eye... saw a gp who referred me to the eye and ear hospital, they made me feel like an idiot and sent me home and told me to come back if my sight hadn't returned in 2 weeks(!). finally my boyfriend forced me to go back to another gp who sent me to ANOTHER specialist who diagnosed the optic neuritis. since then, i've been seeing a neuro-opthalmologist for regular MRI's etc, and while she's great i dont feel like i know a lot about the MS side of things - i understand i have no MS at this stage, but she told me there's still a 20% chance i might develop it in the next 15 years - I know that's only a 1 in 5 chance but that's still a big chance to me - so i'd like to be better informed. I do have lesions in my MRIs, but apparently they're not consistent with MS. i'm going to see a GP in 2 days time to ask her for a bit more info regarding MS (i'll ask if i can get my zinc levels tested too) and if there's any preventative measures i can take... which brings me to your post L. i will definitely ask her about the vitamin D and start taking supplements. i'm not in the uk so i'll have to try and find somewhere here in australia where i can get them (aussie customs are a nightmare, i dont even know if i can get them mailed here from the us!!). thank you so much for your post and for sharing your experiences - it was very helpful! its easy to read lists of "symptoms", but it means more to hear about them in real life terms. so again thank you for your replies i really do appreciate it - so far you guys have been far more helpful than all the specialists and doctors i've seen to date haha :)
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Postby L » Fri Feb 12, 2010 9:21 am

4 in 5 - pretty good odds. You'll be fine! And if you are really unlucky, by the time you need them there will be more effective preventative treatments and possibly even repairative (not to mention the possibilities of CCSVI).

At the moment you may be getting enough vitamin D from the Australian summer sun, although sunscreen is apparently very effective at preventing synthesis, if you happen to use it. I take 10,000iU in summer and 20 in winter. Oh and I forgot, it's D3 that's needed not D2.

A collection of articles:
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334

But this excerpt, way down the page from 'Researchers explore the benefits of supersized doses of Vitamin D for Multiple Sclerosis and other diseases ' details the study which brought my attention to the need to replace the low supermarket dose with high doses:

Researchers are taking a fresh look at vitamin D - the over-the-counter supplement much-ballyhooed as a way to prevent diseases - to determine whether it could be effective as a medical treatment for those who already have chronic illnesses such as cancer.

Although the investigations are in their early stages, any successful outcomes could be a major health breakthrough, giving patients an inexpensive treatment option that's as close as the nearest pharmacy.

Already the so-called sunshine vitamin is glowing brightly in medical circles, with recent studies showing its efficacy in preventing everything from cancer to the flu. Typical of the recent investigations was one conducted at St. Michael's Hospital in Toronto, where multiple sclerosis patients received one of the largest vitamin D doses ever dispensed in a clinical setting.

It yielded some tantalizing evidence that supersizing the nutrient helps calm symptoms of the neurological disease.

The MS patients took up to 40,000 IU daily, or the amount in 50 multivitamins or 400 cups of fortified milk.

(The Canadian Cancer Society recommends taking 1,000 international units daily.)

"We definitely had fewer episodes in the treated group," said Jodie Burton, the principal investigator.

Because no one knows the dose most helpful for MS, Dr. Burton's group wanted to establish first that it was safe to take a lot of the vitamin. Although overdoses are rare, it is possible to take too much, with symptoms including excess calcium in the urine and blood, cardiac rhythm disturbances and kidney damage.

The researchers didn't find these problems. "We saw absolutely no evidence of any issues," Dr. Burton said. "What evidence there is suggests that you can go quite high with this before people start to report side effects."

Many scientists have been wondering whether a lack of vitamin D causes MS because the disease is far more common in countries, such as Canada, where people have low levels of the nutrient in fall and winter because of the seasonal drop in sunlight.

Although vitamin D is available in supplements and is found naturally in some foods, such as oily coldwater fish, most of what people have in their bodies they make themselves, through a chemical reaction that starts when cholesterol in skin is exposed to intense summertime light.

"There is a lot of evidence that suggests if your vitamin D status is really quite good, the risk of getting MS is low," Dr. Burton said. "The natural question after that is, 'Well, what happens after the fact, if you already have MS? Is there any benefit to vitamin D intervention?' "

The researchers gave the vitamin in escalating doses for a year, starting with amounts under 10,000 IU and gradually increasing intakes to peak at 40,000 IU a day. They then reversed the process and slowly lowered the doses to zero.

Averaged out, the patients received 14,000 IU a day, not far off the estimated 10,000 IU a day that people make in their skin if they live year-round in a sunny climate and spend time outdoors. A separate group of MS patients, known as a control group, was able to take up to 4,000 IU a day, the amount Dr. Burton says is the standard recommendation at her clinic.

Those in the trial took the vitamin as a concentrated liquid. The doses had about the same volume as a teaspoon, saving patients from swallowing hundreds of pills.

The amounts were far above Health Canada's recommendations of 200 IU to 600 IU a day, depending on age. The agency also pegs at 2,000 IU daily the safe upper intake by those not under medical supervision - although the MS research suggests the government's limit may be far too conservative.


The article then goes on to detail the effects of vitamin D in preventing various cancers (everyone ought to take it I think. The statistics of just how effective it is are impressive.)
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Postby shye » Fri Feb 12, 2010 12:26 pm

ShinyRedSparkles
I had severe case of optic neuritis years ago (severe pain, loss of vision, retrobulbar neuritis, optic atrophy)--then was ignored by drs, and me, --unfortunately.
But still, MS developed slowly--mainly because I was ill in other ways, liver damage from meds, depression, etc. which caused me to look into nutrition for healing (was getting nowhere with drs.)--one very good article re eyes is
http://www.healthy.co.nz/ailment/1055-eye-health.html

Make sure you are eating well--actually, more than well. NO JUNK FOOD AT ALL, NO SUGAR--lots of raw green vegetables and other vegetables, moderate fruit consumption (and no really sweet fruits like raisins, dates), moderate amt of good protein (eggs--not factory raised, beef if pasture raised with no hormones, likewise with other meats), low on carbohydrates--and use only whole grain, not processed.
Look into allergies to gluten and gliadan--found in MANY MSer's, as well as allergy to milk.
Try to remember, esp when you have a cake or ice cream or whatever in front of you, that you are what you eat :lol:
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Postby AlmostClever » Fri Feb 12, 2010 6:56 pm

Shiny,

My initial "attack" was when my whole lower body went numb after a hot bath. This subsided after a couple of weeks. I also saw a chiro during that time but don't really know if that was the reason for the improvement.

3 years later my first new symptom was tingling toes.

I also had a noticable vibration feeling in one foot that would come for a few seconds and stop repeatedly. Later, I had ON where I lost the central field of vision in my right eye. Overall vision also became very blurry in both eyes when I got heated up.

Hope this helps you recognize any symptoms.

Best Wishes!!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby shinyredsparkles » Tue Feb 16, 2010 3:23 am

I agree L - the odds are definitely in my favour :) i think my neuro-opthalmologist is trying to do the right thing by not talking too much about the MS side of things, but i would prefer to know a bit more than i do currently. It does frighten me that I have a condition that could potentially lead to MS, but at the same time I'm not letting the fear overcome me :)
I have a shocking diet (I'm a hot chips and salt junkie) but I know that regardless of this situation that's something I need to change for my health in general. I wasn't aware that diet played such a big role in MS until reading through these forums, so I think it's the kick up the bum I needed to stop eating so much rubbish!
Again, thanks everyone for posting, you must get sick of so many people coming on here and saying "I'm scared I've got/going to get MS", but like I said in an earlier post - the symptoms of MS on paper could relate to a lot of other things, so to hear this info in real life terms is more helpful than anything else. Thanks :) :) :)
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Postby L » Tue Feb 16, 2010 3:07 pm

Take vitamin D and follow Jimmylegs' advice with the zinc and in fifteen years time this will all just be a bad memory..
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Postby L » Tue Feb 16, 2010 3:08 pm

Take vitamin D and follow Jimmylegs' advice with the zinc and in fifteen years time this will all just be a bad memory. And cut out the chips!! Consider yourself rationed to two a week (chips, that is, not portions)
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Postby jimmylegs » Wed Feb 17, 2010 9:45 am

shiny, ask a compounding chemist for liquid cholecalciferol (D3) 1,000,000 IU/gm.

i hear you about aussie customs - i got some stuff sent to me from canada when i was down there, and it was opened and re-sealed by the time i got it - but i did get it at least.

speaking of 'in the dark', how is your night vision, typically?

as shye and L said, diet's very important too.

www.nutritiondata.com and www.whfoods.com are great sites for looking up nutrient contents in different foods - at nutritiondata they get right down to serving size if you get in deep enough :)

nonetheless, aussie junk food is very tempting, i understand your problem. i could really go for a nice aussie fish sandwich right now! LOL
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby shinyredsparkles » Tue Mar 02, 2010 1:31 am

sorry i didnt mean to disappear, had an unexpected trip overseas :)

jimmylegs, my night vision is shocking. ive always had a problem (especially with depth perception) in low light, it was obviously compounded by the optic neuritis but ive always struggled in the dark. why do you ask?

after much dillydallying, i had a blood test today to test my zinc, vitamin d, and calcium levels tested. My GP told me not to take Vitamin D supplements until we get the results, as it has links to cancer? not too sure about that, but i get my results in a week so i guess we'll see. she (my GP) wants to see my calcium levels, as i also had kidney stones a while back so she wanted to check those too... i wasnt aware of the links between calcium and MS, but again, i guess we'll wait and see :)

and L, yes i'll cut back on the chips i promise, can't promise about the dim sims though haha :)
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