question for experienced ones

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question for experienced ones

Postby meet » Sun Jun 13, 2010 9:53 am

hi everyone.. im new to this disease and the have a lots of questions unanswered. Hope to find some solutions from those who have been fighting with MS. It's been 2 months that I have been diagnosed with 'probable' MS, was given methylprednisolone then. I am on avonex for past 3 weeks. My initial symptoms were stiffness in lower limbs and numbness in lower half. There is still some stiffness left in my legs. My first question is....How much time it generally takes for the symptoms to resolve, whatever they have to ?. Also, many of the symptoms like stiffness in the thumb of my right hand appeared after methylprednisolone treatment....Is it normal to have symptoms afterwards also?. Does that mean the lesions were enhancing even after the steroid dose?.

I have been reading alot and have seen that many people are benefited by dietary changes. However, doctors do not support that. Despite that I have made many dietary changes like low carb in the diet, no saturated fatty acids, VitD3 supplement (my level was 31ng/l), lower milk intake, turmeric rhizome with pepper and basil + ginger extract. Being an Indian, I have seen basil and turmeric doing wonders for viral infections and other ailments. So I strongly feel that these things will help. Does somebody has experience on the natural therapy?.

Also being a research scholar I have done alot of research on how and what to take. Have read that some people take turmeric and boil it enough with water. A word of caution... curcumin is insoluble in water and is moderately stable to heat. So its advisable to not to boil it. Best way I think would be to grind it and take it with milk. Any comments?
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Postby lyndacarol » Sun Jun 13, 2010 12:21 pm

Welcome, meet.

I have a unique perspective on MS -- I think the cascade of symptoms begins with excess insulin (hyperinsulinemia). Since glucocorticosteroids promote insulin production, I suspect that methylprednisolone may actually worsen the situation (initially tying up excess insulin, but ultimately creating even more). Although I have taken a steroid in the past, I do not intend to use it in the future.

With my focus on insulin, I believe that a low-carb diet, which reduces blood glucose and, therefore, insulin, is desirable.

You stated:
Also being a research scholar I have done alot of research on how and what to take. Have read that some people take turmeric and boil it enough with water. A word of caution... curcumin is insoluble in water and is moderately stable to heat. So its advisable to not to boil it. Best way I think would be to grind it and take it with milk. Any comments?
May I ask you a question? I read an article by a dietitian who wrote that there are compounds in turmeric which increase insulin production; he has never answered my letter, in which I sought further information on these compounds. Do you know these compounds? Can you direct me to more information?
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Postby dignan » Sun Jun 13, 2010 4:53 pm

meet, welcome to TIMS. I think symptom resolution time can vary widely. From personal exerience, my sensory symptoms resolved quite quickly, over the course of a couple of months, without steroids. But then there were some residual effects that eventually went away over the course of the following year or so.

In terms of your response to steroids, I don't think there is all that much about anybody's MS experience that can be classified as "normal". Everybody seems to be a little different. Steroids should calm down an attack, but there are probably exceptions, and they don't prevent future attacks.

On supplements, I will now do my best jimmylegs impersonation (member/moderator): if you're supplementing your vit D (good idea), make sure you are also getting the right amount of calcium, magnesium and zinc. If you want to see what has been studied on MS and nutrition/supplements, a good source (up until 2006 at least) is the Accelerated Cure Project's "Cure Map" documents, several of which look at nutrition/supplements and MS, here:

http://www.acceleratedcure.org/curemap/docs.php
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Postby meet » Sun Jun 13, 2010 9:22 pm

hey linda..thanks for the reply..I'm surely looking for a lot of communication with everyone here so that we can fight this disease better..have certainly lost faith on docs here. Anyway..your thought towards insulin is new to me..so will read and get back to you. But there are many questions which will have to be answered if we think on these lines. Like, if what you believe is true then people with medical conditions where the insulin level is low should not get affected by this disease. Is that true?. Secondly..some people have flare-ups once a year despite being on same diet- low carb..lets say. So what happens that their insulin level suddenly rises and leads to flare-ups and then things again settle down for another year. Would like to know your comments on this.

Again I will be able to comment on turmeric promoting insulin production only after carefull reading. However, Curcumin the biological component of turmeric has been shown to completely block the progression of the disease in EAE mice. And looking at the past studies, the EAE model seems to be a good one. Even copaxone was discovered as a drug since it worked in this mouse model. Unfortunately, nobody seems to follow the curcumin study, since it will really be an inexpensive drug if approved.
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Postby meet » Sun Jun 13, 2010 9:30 pm

thanks for the reply dignan. I have been taking vit d3 1000IU, calcium 1200 mg, 40 mg Magnesium, 7.5 mg Zinc. Dont know if the dose is ok since doctors didnt recommend any.
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Re: question for experienced ones

Postby NHE » Mon Jun 14, 2010 12:57 am

lyndacarol wrote:I read an article by a dietitian who wrote that there are compounds in turmeric which increase insulin production; he has never answered my letter, in which I sought further information on these compounds. Do you know these compounds? Can you direct me to more information?


Here's a great reference on turmeric from CRC Press. I was able to get a copy from my local library's interlibrary loan program.

It goes into great detail on the many different compounds in turmeric. I'm sure that it would prove to be a useful reference.

http://www.crcpress.com/product/isbn/9780849370342

Note that this is just one book in a whole series on medically and commercially important herbs.

NHE
Last edited by NHE on Mon Jun 21, 2010 1:36 am, edited 1 time in total.
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Postby L » Tue Jun 15, 2010 5:47 am

Hello there. Sorry to hear about your diagnosis. As has been said above, there is some evidence that turmeric helps (it's thought to be very effective with arthritis, another neurological condition).

I am absolutely convinced that saturated fat is not good for me. I really notice the effects the day after. The stiffness in my legs gets noticably worse.

I adhered to the Best Bet Diet, a very strict diet, for two years but, unfortunately, it didn't help. I am pretty much a vegan anyway though. The one aspect of this diet that I still adhere to is the low saturated fat.

You mention D3. Studies have shown that very high levels of D3 may prevent relapses, in some cases, altogether. By very high I mean 10,000 iU. This could cause problems with calcium levels in your bones although 10,00 is considered by some to be acceptable. I myself took 20,000 daily throughout winter and now 10,000 on days when I receive no sun.

http://www.webmd.com/multiple-sclerosis ... s-relapses

Good luck!

Oh, and symptom alleviation. Sadly, for me, some symptoms were here to stay. But ones that were destined to improve. It could be anything from a day to a week (I presume that's remyelination) to a year or two (I presume that's axons re-routing).
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Postby meet » Tue Jun 15, 2010 10:19 am

L .. I m myself a vegan. Just went through the best bet diet. Almost everything is to be avoided. What to eat!! ...amazing that you followed it for two years
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Postby lyndacarol » Tue Jun 15, 2010 6:23 pm

NHE -- thank you for the links to info on turmeric and curcumin. On first glance I noticed the section on turmeric and hypoglycemia; further study may explain a role for insulin.

Meet --you asked for my thoughts on your questions:
if what you believe is true then people with medical conditions where the insulin level is low should not get affected by this disease. Is that true?. Secondly..some people have flare-ups once a year despite being on same diet- low carb..lets say. So what happens that their insulin level suddenly rises and leads to flare-ups and then things again settle down for another year. Would like to know your comments on this.


I do not have all the answers, but I will give it a go.

It would seem logical that people with absolutely NO insulin would not develop MS (unless insulin is injected from the outside). But if the pancreas is functioning at all, it may respond, not only to diet and blood glucose, but also to glucocorticoid production in the body -- I have even read that the pancreas/insulin response occurs with the perception of a sweet taste in the mouth (due to artificial sweeteners and polyols-- sugar alcohols like sorbitol, mannitol, xylitol, lactitol, erythritol -- as well as sugar).

I am currently reading The Best Life Guide to Managing Diabetes and Pre-Diabetes by Bob Greene. On page 74 he writes:
As some researchers have suggested, because they taste sweeter than sugar, artificial sweeteners train your taste buds to prefer very sweet foods.
It would seem reasonable to assume that any substance like sugar substitutes or sugar alcohols (which are sweeter than sugar) would prompt the pancreas to produce even more insulin than regular sugar does.
Last edited by lyndacarol on Mon Jul 26, 2010 6:28 pm, edited 1 time in total.
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Postby lyndacarol » Sun Jun 20, 2010 10:26 am

NHE -- since you have been so helpful and are aware of my search for a tie between turmeric and the pancreas, I wish to share my recent finding. In reading the book, The Okinawa Program by Bradley Willcox, M.D., Craig Willcox, PhD, & Makoto Suzuki, M.D., I found these passages of interest:
on page 150:...turmeric is thought to strengthen the immune system, relieve inflammatory conditions such as arthritis, improve digestion, relieve gas, kill parasites and worms, alleviate menstrual problems, dissolve gallstones, and relieve other ailments.... While it's still too early to recommend it for specific medicinal uses, turmeric shows early promise for several medical conditions, mainly due to the powerful properties of its major active component, curcumin. Curcumin consists mainly of the smaller bioactive components turmerone, atlantone, zingiberone, and heptanoids. Other compounds mainly consist of various proteins, sugars, resins, vitamins, and minerals.


I seem to be especially sensitive to sugars; perhaps the sugars in curcumin are sufficient to trigger my pancreas to overproduce insulin. My suspicion is enough for me to discontinue taking turmeric.

Among other interesting tidbits of information from this book (although this may not be the best place to post this) is this passage:
On page 174: Chamomile is a wonderfully healing herb. It can help alleviate heartburn, indigestion, and insomnia.... Chamomile, however, does contain a compound called coumarin that can act as a blood thinner, so we don't recommend drinking more than 6 cups a day, especially if you are already on a blood thinner.


Again, I recommend this book.

9/25/ 10 The following is interesting--coumarin banned in US???

http://en.wikipedia.org/wiki/Coumarin
Last edited by lyndacarol on Sat Sep 25, 2010 6:58 pm, edited 1 time in total.
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Postby lyndacarol » Mon Jul 26, 2010 6:39 pm

Here is another item from The Best Life Guide to Managing Diabetes and Pre-Diabetes by Bob Greene. On page 73 he writes:
Caffeine can raise the blood sugar level in some people...

In response to this higher blood sugar level, I think that the pancreas will raise the level of insulin secreted.
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Postby jimmylegs » Mon Jul 26, 2010 8:36 pm

hi meet

aside: lol @ diggylegs ;D

back on topic: meet i was diagnosed with MS after 15 yrs of veganism. i have spent a lot of time trying to figure out why veganism could possibly have led to my diagnosis. feel free to private message me if you are interested in learning more :)
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Postby elyse_peace » Mon Jul 26, 2010 10:56 pm

Hello Jimmylegs,
you said: i was diagnosed with MS after 15 yrs of veganism.
I also followed a vegan diet for numerous years prior to my diagnosis. I never associated the two. I am very interested in what you learned re: veganism and your ms diagnosis.
Thank you in advance for any info you can pass on. And, thanks also for all of your research into things nutritive.[/url]
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Postby jimmylegs » Tue Jul 27, 2010 4:44 am

hi EP i was pretty certain that my veganism caused my MS for a number of reasons. i figured out early on that i could no longer mess around not taking supplements. i had resisted the idea of supplements the whole time but with my dx attack the wheels sort of came off that idea.

my early reading had a lot to do with figuring out exactly what supplements i would need to take to best approximate an omnivore diet without animal products. i gradually realized that science has not been looking at food and nutrition for long enough to tell me about appropriate substitution not just for, say, omega 3 fatty acid, but for a piece of fish with all the various synergistic interactions between its components. i also realized i did not have time to research how to be the most biologically appropriate vegan - i had to make some corrections NOW.

i was up against two boycotts, one the industrialization of animal foods, and the other the pharmaceutical industry. i chose not to take drugs and i went back to eating animal foods, making the best choices i can, as often as i can afford them.

i have to go get ready for work now, but the main thing that tipped me off was the b12. i was all about b12 when i first joined up here at TIMS. more on that later :)

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Postby L » Tue Jul 27, 2010 7:57 am

meet wrote:L .. I m myself a vegan. Just went through the best bet diet. Almost everything is to be avoided. What to eat!! ...amazing that you followed it for two years



I didn't know what was worse, the diet or the MS. And it definitely didn't stop relapses. But what a joy when I ditched it, to be able to eat things again!
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