A little advice....

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A little advice....

Postby James78 » Thu Sep 09, 2010 2:26 pm

Hi there, my name is James, i'm 31 and based in the UK

As I write this, I feel OK, in fact I havent been officially diagnosed yet, after seeing a very eminant neurologist who gave me some simple tests in his office, he told me I dont have MS, this was followed up by bloodwork and an MRI of neck, spine and head...The bloodwork was clean, the scans were all clean.....the doctor feels vindicated, and have been 'officially' diagnosed with spreading depression and given anti seizure medication, and I am now feeling better, but here is my problem

A few weeks ago was my second 'attack', the one before was late November, the latest was much worse, both times I have had massive weakness in legs (mainly left), but the latest attack I also had huge brain fog, poor circulation(cold hands), chest rash, tiredness (fell asleep at my desk at work in middle of day despite hours sleep night before!), mild pins and needles. tingly gums and other symptoms.....How can all that be put down to what the doctor has essentially diagnosed me as having a headache? On top of all this, despite feeling better (tho still not 100%) my eyesight has deteriorated in my left eye, I felt some pain when this first occured, the eyesight loss is pretty mild at the moment but certainly noticeable and only in one eye.....I have had on/off bladder urgency over the years and occured again during both attacks....and the final huge point is auto immune in my family runs deep, a Mother with Hughes (blood work showed negative for me for this) an Auntie with lupus (again I showed negative) and a second cousin with MS

So I'm convinced I am at the start of my MS journey, even if the medical profession isnt convinced....So I just wanted some advice, what the hell do I do? I got offered a new job last week, I turned it down, I'm avoiding anything that might invoke stress....I've taken jimmylegs advice, vit d, zinc, vit B, omega three supplements daily, along with green tea, gingko biloba....I have eliminated red meat, smoking, excess alcohol and refined sugar, upped my fruit intake....I was just hoping someone out there with a little experience, who was once where I was could offer some words of wisdom? What would you do now if you were me? Pretend this isnt happening? Follow some rigerous diet? ......Would you get CCSVI tested if you were in my shoes (I'm planning to)? Start on LDN? If I am proved right, what can I do to delay the onset of lesions?

I'm currently spending some days with my head buried in the sand, and other days very worried

Any advice greatly appreciated

thankyou all
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Postby Mirry » Thu Sep 09, 2010 6:11 pm

Hi fellow brit, what part of the UK are you in?

I lost the sight in my right eye in 1996, just happened whilst approaching a roundabout, not the best of timing. I didn't have any signs that this was going to happen.

Anyway, I went to the Dr's in Norwich and he told me that I needed to see an optician. So booked the appointment and she was very concerned, wrote me a letter and told me to go straight to the hospital (norfolk & norwich). I did and they admitted me. This is when they started testing for MS. I had a lumbar puncture and I would advise you push for one as this can tell a lot, and I also had some type of test where they connect leads to your head and I had to sit and watch funny black and white shapes etc on a screen. At that time, they said my results were inconclusive for MS, but my Dr was pretty sure I had it but he said it was dormant.

To cut a long story short, here I am now in the states and after going to the Dr for something totally different, have had a barrage of tests and have been confirmed as a positive diagnosis.

Anyway, with regards to your blood work, I was told by my Dr here it was normal, but it was not according to my MS specialist. I would contact jimmylegs on this site, she can tell you whether your bloods are "normal", she is a huge wealth of knowledge in this area, so contact her, I am glad I did.

I would also seek a 2nd opinion regarding your MRI scans, your entitled to that on the NHS too. Have your doctor refer you to an MS specialist, make sure you research what Dr's are out there and check them out first on the website. I wish I had done that with my first one here.

Keep us updated and good luck.

Mirry
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Postby jimmylegs » Thu Sep 09, 2010 6:26 pm

james just chiming in to ask what made you decide to eliminate red meat? i will have a look at your post in more detail after a night's sleep :) just got done a verrryyy long day!
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 James78 » Fri Sep 10, 2010 12:42 am

Thankyou both, I am based in London, I saw a GP end of last year when first had problems who thought 'hmmm, sounds like MS'....But he sent me to a urulogist last year, who thought 'hmmm, sounds like MS' and called in a favour from a very well respected/known neurosurgeon who ordered an MRI of spine that very day(!) and did a series of little tests in his office.....all came back OK and he said 'you dont have ms' and my bladder issues went away and put it down to one of 'those things' without looking into it anymore and went back to my party lifestyle (which involves waaayyyy too many late nights and drinking and fastfood)....and then 3 weeks after a very heavy stag do (batchelor party) which was just 3 days of insane drinking and junkfood, im laid up in bed for a few days, unable to walk far without vertigo, massive diarreah (lost a ton of weight), pain behind eyes, leg cramps ect. I was too scared to see a doctor at first, but a new GP agreed it sounded auto immune, thats when I first came accross this brilliant site and discovered CCSVI ect.
The neurologist I saw was actually mentioned to me in a PM from a board member here, he specialises in MS, and I think is pretty well regarded

As for red meat, I dont know, I was weight lifting before I got sick too, and was taking iron supplements....and I am def zinc deficient, which is a counter to iron, so I am figuring dont load my head up with any excess iron if I can help it, so have eliminated where iron is found, fortified cereals and red meat......Maybe I am being 'too careful'.,....but if someone said wearing a rabbits foot around your neck has a 0.001% chance of helping I probably would wear one! Anything i can help delay onset I am 110% up for....

thankyou again
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Postby jimmylegs » Sat Sep 11, 2010 6:41 am

hi james heavy alcohol consumption and a junk food diet would definitely drive your zinc down, among other things.

zinc deficiency is known to cause iron dysregulation and deposition. i'm trying to post a link to an old post on zinc and vascular illness but the post link is not cooperating and keeps dumping to a different post! grr.

anyway. just for starters your low zinc will (read about in literature and confirmed on myself through lab testing) have dragged down your uric acid. also it will have hampered your body's ability to deal with vitamin D. although not personally tested for correlation, low zinc can affect your vitamin A status and that's just a few points among many, many other things. low zinc = low testosterone for example.

best thing to do is some testing. sounds like you already had a zinc test. what was your result, IIMA? have you had a serum ferritin test or any other iron tests?

do you have the list of known usual suspects for ms suboptimal levels?

just an FYI, red meat is your best source of zinc and you should eat a serving a week at a minimum, test your levels of the key nutrients of concern, and arrange your diet and supplementation program accordingly.

hope that is something you can use!

i'll chime back in if i can make that other link work :S grr
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 jimmylegs » Sat Sep 11, 2010 8:47 am

hi i had to redo the pulling together of old posts on the zinc vascular connection. here you go!

http://www.thisisms.com/ftopicp-49152.html#49152
Posted: Fri Dec 19, 2008

more on zinc

http://www.rowett.ac.uk/newsletter/Reso ... ticle4.pdf
In this article, John Beattie describes how dietary zinc intake may influence vascular health and disease. He demonstrates that the development of vascular disease is accelerated in marginal zinc deficiency and investigates a mechanistic basis for this influence, possibly involving vascular smooth muscle structural proteins...

http://grande.nal.usda.gov/ibids/index. ... row=361901
Our data indicate that zinc is vital to vascular endothelial cell integrity, possibly by regulating signaling events to inhibit apoptotic cell death.


http://www.thisisms.com/ftopicp-49483.html#49483
Posted: Fri Jan 02, 2009

... -Zinc deficiency changes your iron metabolism.
i found an in vitro study; will look for more:
http://www.jbc.org/cgi/content/abstract/283/8/5168
Zinc Deficiency-induced Iron Accumulation
One consequence of zinc deficiency is an elevation in cell and tissue iron concentrations... The increase in cellular iron was associated with increased transferrin receptor 1 protein and mRNA levels and increased ferritin light chain expression...

...and i think i already linked to this before too:
http://www.jacn.org/cgi/content/abstract/27/5/577
Zinc Deficiency Induces Vascular Pro-Inflammatory Parameters

and for good measure:
http://www.ebmonline.org/cgi/content/full/223/2/175
Zinc Deficiency Exacerbates Loss in Blood-Brain Barrier Integrity Induced by Hyperoxia Measured by Dynamic MRI


http://www.thisisms.com/ftopicp-49814.html#49814
Posted: Thu Jan 08, 2009

an interesting crossover between vascular issues, ms, and zinc status
- small n, but whatever:
shortened link added

Williams and colleagues compared the nutritional status of a group of 10 women with multiple sclerosis and pressure ulcers with 10 women free from any chronic wound. While the women had low normal values of several vitamins and trace elements suggesting very mild deficits, serum zinc levels were considerably less than normal ranges, suggesting a more significant deficiency. Balaji and Mosley treated a group of 50 patients with large vascular ulcers of the lower extremities and associated both zinc and vitamin C deficiency with delayed wound healing.


inserting williams abstract mentioned in the abstract above:
shortened link
Iron and zinc status in multiple sclerosis patients with pressure sores.
Williams, C M : Lines, C M : McKay, E C

Measurements of weighted dietary intakes and plasma determinations of albumin, iron, zinc, ascorbic acid and TIBC were carried out on twenty female multiple sclerosis patients in a long-stay hospital for disabled people. The group included ten patients with a recent history of pressure sores, closely matched with ten patients without pressure sores. Mean daily intake of carbohydrate was found to be higher in the non-pressure sore group whilst intake of zinc was lower in this group. Intakes of all other nutrients were comparable between the two groups. For both groups, intakes of energy, folate, vitamin D, iron and zinc were less than recommended values. Mean plasma levels of albumin and iron were towards the lower limit of the normal range, whilst that for zinc was considerably less than the normal range. Plasma TIBC was slightly above the normal range. Levels of plasma iron and zinc were significantly lower in the pressure sore group. The data indicate that severely disabled hospitalized patients with multiple sclerosis may be at risk of poor nutritional status. The results suggest that in the presence of pressure sores, there are increased requirements for specific nutrients, notably zinc and iron. Consideration is given to the possible value of supplementation of these individuals.


http://www.thisisms.com/ftopicp-50930.html#50930
Posted: Fri Jan 30, 2009
Zinc Deficiency Induces Vascular Pro-Inflammatory Parameters Associated with NF-{kappa}B and PPAR Signaling

In the current study we hypothesized that vascular dysfunction and associated inflammatory events are activated during a zinc deficient state.

Zinc deficiency increased oxidative stress and NF-{kappa}B DNA binding activity, and induced COX-2 and E-selectin gene expression, as well as monocyte adhesion in cultured endothelial cells.

For example, rosiglitazone induced inflammatory genes (e.g., MCP-1) only during zinc deficiency, and adequate zinc was required for rosiglitazone to down-regulate pro-inflammatory markers such as iNOS.


hope you get a chance to address that zinc deficiency james! the average serum zinc level for healthy controls is 18.2 - 18.4 umol/L.
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 James78 » Tue Sep 14, 2010 11:50 am

Thanks Jimmy, I will read through all of this

This is very useful, but Im interested in the whole question, 'what would you do differently if you can go back to the time of diagnosis, before decline had set in'? Torn between living like a monk, and living like a crazy person and enjoying certain things while I can......I guess the most sensible thing for me to do is to identify what i really want out of life, exercise every day, eat well and not let my illness get in the way of life as much as possible......
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Postby jimmylegs » Tue Sep 14, 2010 2:58 pm

if i could visit myself 15 years before dx and somehow convince myself that my vegan idea was wrong (good luck) and that monitoring blood levels was crucial, i don't know how far i would have gotten with myself.

i already was sold on acidophilus.. i might have been able to make a point with magnesium and menstrual pain.. but other than that i'm not sure ..

for me, getting really sick was the wake-up call i needed. if i had been doing everything that i'm doing now for the entire 15 years leading up to dx, i am virtually positive i would not have an ms diagnosis today.

(for that matter, if i had been able to clearly express myself to my docs at the time of dx, i probably would not have an ms dx either, but that's another tale).
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 James78 » Wed Sep 15, 2010 1:12 pm

Thankyou again jimmylegs

So here is my 'plan' so to speak

- Yoga session early am every day
- Freshly made fruit juice early am (with lots of fruits with antioxidants)
- 3 square meals during the day, minimise saturated fats, excess iron
- No junk food, fruit only inbetween meals
- Smoking given up
- 5 x exercise during course of week (cardio and/or weights)
- Vit D (4000mg), Omega 3 supplements, 40g zinc, 300g green tea, 120mg Ginko Biloba
- Alcohol to minimum

On top of this I will get my blood work checked for food allergies, and get a thorough heavy metals test...Celiacs came back as negative.....

Anything else i am missing?

All the above is easier said then done, i'm a little up and down at the moment......I will do my best though :-)
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Postby jimmylegs » Wed Sep 15, 2010 4:20 pm

looking great james! just make sure your food combinations are good so that intakes work together rather than causing poor absorption.
eating zinc rich foods with extremely common high phytate foods can really impair zinc absorption.
just a thought :)
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 Mirry » Wed Sep 15, 2010 7:43 pm

Glad you are feeling more positive James, but now I am going to have to get my backside in gear regarding fitness/diet etc, thanks for making me feel guilty :lol:

Think I might start by buying a power juicer lol

As for diets, I looked at the Best Bet Diet, then I looked at the Paleo diet, both written apparently by experts in MS but both contradict the other, I am so confused :?

I think what would make it easier is good old fish n chips, roll on April as thats the first thing I am having when i get off that plane...
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Postby James78 » Thu Sep 16, 2010 1:17 pm

Thankyou Mirry/ Jimmy

I should add Mirry that I have bought a power juicer, I am having one a day, and apart from cleaning the damn thing its pretty hassle free and the juices taste wayy nicer than supermarket stuff.....I sneakily add in things like celery, which you cant taste because the apples and berries overwhelm it, it just makes it that little bit healthier. Berries are great for anti oxidant properties..... :-) Very much recommend taking it up, and will be moving onto smoothies next......

Jimmy, It so much easier to be positive when you are feeling better, but I am very up and down at the moment which means keeping up the exercise regime is very hard (running is out of the question at the moment, simple yoga is hard enough).....

I have such enormous respect for people on this board, who are a little further down the line than me and who just have the most amazing attitudes, it is incredibly inspiring....I am planning a sponsored charity 3 day walk to raise money for CCSVI if I recover well enough inbetween attacks to take it on.....thats my goal anyway....
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