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A forum to talk about the general challenges of daily life with MS.

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Postby ms_turophile » Tue Jul 20, 2010 2:19 pm

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Re: Coping Strategies

Postby NHE » Tue Jul 20, 2010 3:07 pm

Hi ms_turophile,
Are you on any MS medication besides the steroids? How about dietary changes and supplements?

NHE
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Postby ms_turophile » Tue Jul 20, 2010 5:33 pm

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Postby L » Wed Jul 21, 2010 5:03 pm

Would you be able to afford CCSVI testing and treatment in Albany or elsewhere? That's what I'd aim for if I was you. With such frequent relapses I'd consider that your best bet. A few people on these boards are down on CCSVI but I consider it to be the most promising thing for us right now.

Rituximab has stopped my relapses this last year (I would have a seasonal relapse, one or two every spring.) I mention this second, after CCSVI, because, for one, it is difficult to have this prescribed, and for another, it is suppressing the immune system and not addressing the root problem, which I believe CCSVI treatment does. .It has been effective for me since I had an infusion in the winter. No relapse, no worsening of symptoms for the first time in years.

But with early MS, you wouldn't be the first to find yourself free of MS, or almost free, post CCSVI treatment. There's a good chance.
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Postby ms_turophile » Mon Jul 26, 2010 11:12 am

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Postby Wonderfulworld » Sat Aug 07, 2010 1:33 pm

Hi MS-turophile
it is very hard in the early days after diagnosis. In my own case it took me years to get my head around the whole relapse/recover/start again/....cycle.

You are having a lot of relapses alright - are they true relapses or are they periods of slight worsening due to tiredness or infection or something else? I hope you don't mind me asking you but what I used to think was a relapse I would only consider a period of increased symptoms now....not really a true relapse. If you'd asked me in the first year after diagnosis I would have probably said the same thing as you- but now I think I only get 1-2 relapses per year, 1 probably. If you are female then your cycle can cause a pseudo-relapse (if you're male, apologies :lol: )each month, and bc pills can regulate that to an extent.

The other advice I'd have is to sort out the pain issue. I didn't until 10 years after diagnosis. I spent 10 years in pain and trying to cope. There are medications you can take for nerve pain - ask your neurologist about it. Some of these meds can take up to 2 months for your body to adjust to - I'm on a low dose of amitriptyline for nerve pain and it was really tiring for the first 2 months. I have adjusted to it somewhat now.

Finally, I'd strongly suggest you get your doctor to test your Vitamin D3 levels. I too took a supplement in the past, and only got tested 2 years ago. I had insufficient levels, and it drops very quickly without a high level of supplementation. I have to take it in conjunction with calcium, zinc and magnesium and once I have all the dosages right my D3 levels rise again. There is a strong link between MS activity and D3 levels - at least it's one positive thing you can do for your MS.

HTH and good luck.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby ms_turophile » Sun Aug 08, 2010 12:57 pm

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Postby Wonderfulworld » Mon Aug 09, 2010 7:01 am

They are "true" relapses. This is not my opinion, it is my neurologists. I've also had many "pseudo" relapses due to an appendectomy and a few minor illnesses, so I can mostly tell the difference.

Gosh that is a lot of relapses per yr then, very tiring and frustrating for you.

Re. the pain thing, I never did find anything else to alleviate true nerve pain - hence my suggestion of the painkillers. Nerve pain doesn't respond to much except the Gabapentin, Elavil etc type of drugs. I always felt a bit better in the cool aisles of the supermarket but you can't hang about there forever!

As I said, I am taking vitamin D; my level was tested when I was first assesed and diagnosed, and is/will be retested at regular intervals.

:oops: sorry, was ill with a viral infection when I replied to you, head not working properly, didn't see your mention of the vit d testing.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby jimmylegs » Mon Aug 09, 2010 7:35 am

ms t, re b12, D3 and the multi: good choices.

what was your d3 level, if i may ask?

also, have you had zinc or magnesium tested? these are key for ms patients.

fyi, taking d3 and calcium without balancing with zinc and magnesium is VERY likely to be problematic.
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 ms_turophile » Wed Aug 11, 2010 9:49 am

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Postby ms_turophile » Wed Aug 11, 2010 9:55 am

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Postby jimmylegs » Wed Aug 11, 2010 10:48 am

ms_t, i have personal experience with problems taking d3 without getting the right balance of zinc, calcium, and magnesium. it even comes down to timing.

i thought i was going to die when my magnesium levels got driven down due to only taking magnesium with calcium and d3, never a mag supplement on its own, and not enough in my diet.

as for zinc a very standard diet can interfere with zinc absorption resulting in issues that are seen across the board in a variety of modern illnesses.

patients need to be very clear about what deficiency actually means - in many cases where deficiency is not clearly defined, you'd have to have a result outside the 'normal range'. from everything i've seen you would need to come back with either the highest or lowest value ever recorded by your lab to be flagged as deficient or toxic. however, within the normal range itself you can find extensive research showing smaller clusters associated with healthy people and sick people.

there are many nutrients of concern that i monitor for my ms. almost every result i have ever received came back inside the 'normal range'. however, they also match an 'ms patient profile' within the normal range. there is a distinctly and significantly different 'healthy control' profile, also within the normal range. neither profile is considered deficient, both are normal. that's not good enough for me, so i test and supplement to ensure a healthy blood profile, resulting from healthy dietary choices, bloodwork, and supplementation where needed.

there are well known reasons to balance d3, calcium, magnesium and zinc, based solely on the number of blended supplement products available. nonetheless, here are a couple of abstracts:
Vitamin D and calcium deficits predispose for multiple chronic diseases
Abstract
There is evidence from both observational studies and clinical trials that calcium malnutrition and hypovitaminosis D are predisposing conditions for various common chronic diseases. In addition to skeletal disorders, calcium and vitamin D deficits increase the risk of ... multiple sclerosis), as well as of metabolic disorders... The aim of the present review was to provide improved understanding of the molecular and cellular processes by which deficits in calcium and vitamin D cause specific changes in cell and organ functions and thereby increase the risk for chronic diseases of different aetiology...
... attenuation of signal transduction from the ligand-activated vitamin D receptor and calcium-sensing receptor seems to be the prime mechanism by which calcium and vitamin D insufficiencies cause perturbation of cellular functions in bone, kidney, intestine, mammary and prostate glands, endocrine pancreas, vascular endothelium, and, importantly, in the immune system...
Magnesium Absorption: Mechanisms and the Influence of Vitamin D, Calcium and Phosphate1
...Pharmacological doses of vitamin D increase Mg absorption in both vitamin D-deficient and vitamin D-replete animals. A substantial amount of Mg absorption, however, occurs independent of vitamin D. In addition, vitamin D may reduce Mg retention through increases in urinary Mg excretion. Intestinal interactions between Mg and calcium or phosphate have been demonstrated in both humans and animals. The nature of these interactions cannot be readily explained by data currently available.
Vitamin D insufficiency and the blunted PTH response in established osteoporosis: the role of magnesium deficiency
Abstract
Vitamin D insufficiency is common, however within individuals, not all manifest the biochemical effects of PTH excess. ... The mechanism underlying the blunted PTH response is unclear but may be related to magnesium (Mg) deficiency. ... All subjects, within the low vitamin D and low PTH group following the magnesium loading test had evidence of Mg depletion [mean(SD) retention 70.3%(12.5)] and showed an increase in calcium 0.06(0.01) mmol/l [95% CI 0.03, 0.09, p=0.007], together with a rise in PTH 13.3 ng/l (4.5) [95% CI 3.2, 23.4, p=0.016] compared to baseline. ... This study confirms that in patients with established osteoporosis, there is also a distinct group with a low vitamin D and a blunted PTH level and that Mg deficiency (as measured by the Mg loading test) is an important contributing factor.
Enhancement of vitamin D3 effect on bone metabolism in weanling rats orally administered zinc sulphate
Masayoshi Yamaguchi and Teruyuki Sakashita
Abstract. The interaction of vitamin D3 and zinc on bone metabolism was investigated in the femur of weanling rats. ... At a dose of 0.5 µg of vitamin D3 per 100 g, DNA content was at the control level. This level was increased about 2 times by simultaneous administration of zinc (1.0 mg/100 g). ... The present data suggest that the combination of vitamin D3 and zinc has a multiple effect on the stimulation of bone growth and mineralization in weanling rats, and that this effect is based on a stimulation of the DNA synthesis in bone cells.

i just posted a few studies about various nutrients in ms for mirry. you may find them interesting reading:
http://www.thisisms.com/ftopicp-128490.html#128490

HTH!
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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