Anyone here not taking any MS Meds?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby HarryZ » Sat Nov 29, 2008 6:20 pm

DIM wrote:Exactly Cheer with the term "therapy" I mean a healthy diet, supplements, exercise and everything else could help.
By the way Swank diet works for MSers and is basically based on a low fat diet, fats tend to thick and cause sticky blood!
That's another reason why the abobe blood thiners may be helpful in almost all cases of MS and most of them work as antivirals-antibacterials.


Absolutely....a healthy diet, supplements and proper exercise is extremely important for MS patients. I was referring to the CRAB and/or Tysabri which a lot of neuros seem to want their patients to start immediately. As we all know, these powerful drugs can have a lot of nasty side-effects and make life quite uncomfortable beyond one's MS.

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Re: Anyone here not taking any MS meds?

Postby NHE » Sat Nov 29, 2008 9:57 pm

HarryZ wrote:Some MS patients, after their initial attack, go years without any further problems. Starting them on one of the heavy duty drugs might be detrimental to their overall health as opposed to beneficial.

This was my experience. I had my first attack 8 years before I was diagnosed. During my initial attack I had numbness in my shoulder that went down my arm to my thumb and forefinger. This stuck around for about a month. I saw several doctors and even paid a neurologist a large sum of money to talk to me for half an hour. The numbness eventually cleared up and I went about my life for the next 8 years without any further problems.

However, had I been diagnosed at that time, I could have been on any treatment and it would have reasonable for me to conclude that said treatment was beneficial for me. In reality, the 8 year period I was symptom free was just part of the natural course of my relapse-remitting disease.

Looking back, unaware of my pending problems with MS, I made no adjustments to my lifestyle or diet. I feel quite strongly that had I been diagnosed at that time, or at least been told that it was probable that I might go on to later develop MS, and modified my diet to eliminate proinflammatory foods such as trans fats and increase my consumption of anti-inflammatory foods and supplements, such as omega-3 fish oil, green tea, vitamin D, and r-lipoic acid, that I might have delayed my second attack and subsequent MS diagnosis. Indeed, I think that this would make a great study for people given a diagnosis of a clinically isolated syndrome (CIS). In effect, how do dietary and lifestyle changes modify the onset of clinically definite MS?

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Postby yeb4432 » Sat Nov 29, 2008 10:30 pm

Great questions! Over those eight ears had you had MRIs, especaillyof your spinal cord? The symptoms you described represent spinal cord involvement. Over those eight years diet modifications good, but best would be to start something like Copaxone, a fairly benign med, with good effects when MS is dxd in its larval stages, before you get epitope spreading.

Much of MS's effects are silent with no outward evidence, other than evidence on MR or spinal fluid analysis and this is why early treatment is so effective, I am not aware of any concrete scientific data that supports the diet claim but a lot of it makes good sense. I do know that early treatment for MS yeilds less disability in the future:
PRISMS Study Group. Randomized double-blind placebo-controlled study of interferon β-a in relapsing-remitting multiple sclerosis. Lancet 1998;352:1498-1504

Neurol 2002 Apr; 51:481-90.
Source: Lancet. 2007;370:389-397.


Best wishes...
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Postby HarryZ » Sun Nov 30, 2008 6:41 am

yeb4432 wrote:Great questions! Over those eight ears had you had MRIs, especaillyof your spinal cord? The symptoms you described represent spinal cord involvement. Over those eight years diet modifications good, but best would be to start something like Copaxone, a fairly benign med, with good effects when MS is dxd in its larval stages, before you get epitope spreading.


Yet the Cochrane Group, an independent research organization, looked at the data from Copaxone and published a report that it was basically useless in the fight against MS. The results from all the CRABs appear to be rather similar...about 30% effective. Does it not seem strange that these drugs give approx the same result even though they are slightly different from each other?

Much of MS's effects are silent with no outward evidence, other than evidence on MR or spinal fluid analysis and this is why early treatment is so effective, I am not aware of any concrete scientific data that supports the diet claim but a lot of it makes good sense. I do know that early treatment for MS yeilds less disability in the future:
PRISMS Study Group. Randomized double-blind placebo-controlled study of interferon β-a in relapsing-remitting multiple sclerosis. Lancet 1998;352:1498-1504


The evidence of MRI's? MS lesions come and go and have little or no correlation with the disease's symptoms. The number of lesions doesn't mean much...it's the location of these lesions. Many lesions and you could have very mild symptoms. A few lesions in the wrong area and you can be very disabled. The drug companies for years have hung their hats on the number of lesions on MRI's to determine the effectiveness of their medications. They continue to remind us of this in order to keep their sales up. And the cost of their drugs....instead of declining after many years of availability, they continually go up!

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treatment vs. no treatment

Postby yeb4432 » Sun Dec 07, 2008 9:27 pm

undeniably treatment is better no treatment, you make excellent points about locations of lesions that is one of the mysteries of ms. unless i misunderstood you, copaxone is very effective when given early before the disease has begun to demonstrate progression.

on ther mri findings coment, i totally disagree with you there.
he evidence of MRI's? MS lesions come and go and have little or no correlation with the disease's symptoms. The number of lesions doesn't mean much...it's the location of these lesions. Many lesions and you could have very mild symptoms. A few lesions in the wrong area and you can be very disabled. The drug companies for years have hung their hats on the number of lesions on MRI's to determine the effectiveness of their medications. They continue to remind us of this in order to keep their sales up.

MR evidence is one marker for a medications effectiveness. oI am sure you remember when there was nothing for treatment for MS 20 years ago. It is utterly irresponsible reckless and ultimately dangerous for someone to be given the choice of treatment and not take in in lieu of a therapy not proven, such as bee stings, diet alone, ect. Especially when many of these can be adjunctive to prescrined medications. I am not suggesting this is what you are saying, but you sound very angry and someone could take what you and a number of others on this site way wrong,
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Postby jimmylegs » Mon Dec 08, 2008 8:01 am

is utterly irresponsible reckless and ultimately dangerous for someone to be given the choice of treatment and not take in in lieu of a therapy not proven, such as bee stings, diet alone, ect.


bee stings and diet mods in the same basket. interesting perspective. i suppose it's true that diet couldn't possibly have any proven effect on ppl's health. why do we even bother eating at all, i mean really.
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Postby yeb4432 » Mon Dec 08, 2008 8:48 pm

i guess i don't need to ask if you understood what i was saying. i at least wasn't trying to be sarcastic. no point in even explaining this to you, but for the people that do care and are open to listening;

Diet and exercise and even bee stings if you are a sadist or other things like that can all be important as a PART of treatment for MS, but to rely it as the only treatment is dangerous proposition.

Today treatment for MS is approaching 100% efficacy in terms of reducing the active component of the disease. With remylination agents around the corner in another 10 or so years why would anyone want to use something that "might" work in lieu of something that "does" work. I am all for diet, relaxation, reiki, ect but when it comes to if i am going to walk see or control my bladder in the next ten years i am willing to accept reasonable risks.

I am sorry that having MS for 15 years and caring for people with MS that are far worse that me, I am not trying to be sarcastic about anything I might post. I take this MS thing very serious and if i can share one thing that someone can take and use then I'm ok with that. MS will steal our life away from you if you are not serious about protecting it.
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Postby CureOrBust » Mon Dec 08, 2008 10:05 pm

to "rely" on treatments that are only 30% effective would be considered a "dangerous proposition" by some people; jimmylegs obviously being one of them. Yes I know of Tysabri, but I also know of PML.

Today treatment for MS is approaching 100% efficacy in terms of reducing the active component of the disease. With remylination agents around the corner in another 10 or so years why would anyone want to use something that "might" work in lieu of something that "does" work.
Efficacy is a word of contention, let alone that "approaching 100%". And 10 years (OR SO) is a mighty big corner to turn, of which there is no guarantee of it ever arriving in our lifetimes.

Actually, I just realised, planning on treatments to "come around the corner" in my mind, is very similar to "use something that might work in lieu of something that does work". :)

PS: I would personally never do Bee Sting therapy, until after the trials.
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Postby jimmylegs » Tue Dec 09, 2008 6:12 am

let's consider some phrases:

this is ms homepage -
"We offer an open-minded approach to *all* potentially viable treatments" [emphasis added, obviously]

versus...
"you sound very angry and someone could take what you and a number of others on this site way wrong"
"utterly irresponsible reckless and ultimately dangerous"

i smell bull in china shop
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Efficacy of CRABS

Postby Shayk » Tue Dec 09, 2008 9:34 am

I think it's important to emphasize Cure's point
Efficacy is a word of contention

From Lancet on Multiple Sclerosis
Licensed disease modifying agents reduce the frequency of new episodes but do not reverse fixed deficits and have questionable effects on the long-term accumulation of disability and disease progression.

Take care everyone

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Postby yeb4432 » Tue Dec 09, 2008 9:08 pm

Wow! I am familiar with the "underpinnings of the "contention" statement I made as well as the purpose of boards like this. People can disagree with what I say and I a m ok with that, I hope for the best for all. We are all in this disease together.

I make the choice to stay positive. People on this site want to accuse my posts of being angry... and that they can smell a bull in a china shop with my posts. Even as being overly optomistic or inflating my claims.

I have backed up every one of my statements with documented literature and even included citations. Approaching 100% efficacy is obviously not 100% efficacy. But there are scientifically documented ways of getting much greater than the 30% efficacy h the ACBRs. (see the previously documented citations of multiple study evidence)

Without hope what else is there? I am confused on how posting

[/quote]And 10 years (OR SO) is a mighty big corner to turn, of which there is no guarantee of it ever arriving in our lifetimes.

Actually, I just realized, planning on treatments to "come around the corner" in my mind, is very similar to "use something that might work in lieu of something that does work".
differs from what i am saying other than the fact that the things that I post as "might work" have been tested not in one or two big medicine financed trials, but through many." [quote]


is beneficial for anything...and I am accused of being angry...

I am not counting on remylination to be here this year or next year or in a many years I just want to be in the best neurologically competent shape when it does. Didnt anyone read the ECTRIMS reports from this last year?? I am hopeful but not waiting with baited breath.

I understand that people dont agree with this perspective and that is fine, dissecting my post wont change my thoughts and the truth is still the truth even if it is in the minority of one.
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Postby cheerleader » Tue Dec 09, 2008 9:24 pm

yeb4432 wrote:I understand that people dont agree with this perspective and that is fine, dissecting my post wont change my thoughts and the truth is still the truth even if it is in the minority of one.


Hi Yeb-
Welcome to the boards...you have every right to express your opinions and the truth as you see it, but be forewarned, not everyone is going to agree. Don't take it personally...that's just the way it is here. The folks that have responded to you on this thread have had MS for awhile, and are posting from their experience. Harry lost his dear wife to MS last year. He took care of her for many years, and knows of what he speaks.

In MS, as in religion and politics, the "truth" can be very subjective. I encourage you to take meds, do all you can to fight your MS. That's what we're doing for my hubby who is stable, progression and relapse free for 2 years (and you're not a minority of one :).) Share with us what you're doing in the regimen section. Find the cure for this miserable disease!!! But please, respect those who do not share your view. They are not wrong. That's all we're saying-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Wed Dec 10, 2008 6:43 am

yeb if you're offended by reading your own Dec 8 words (to harry) quoted back to you on Dec 9, perhaps you can appreciate why others might not be jumping for joy at your expressed opinions.
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Postby yeb4432 » Wed Dec 10, 2008 10:02 pm

seriously, i can give it and take it, that is not what i am trying to do. this is seriously juvenile... me getting upset at my own words to so and so.

People have repeatedly said in response to my posts that this is an open site to share ideas and that,"I might not like other's ideas", but it seems as though i am not the one not accepting of other's ideas. I respect everyone and what they say and just as they may not agree with me me them.

i have had MS for 15 years and i am far from stable I am just trying to not worsen, that was not the "minority of one comment." MS is insidious, it is always there, slowly progressing even without any symptoms at all. MS when not active lulls us all into a sense of false security.
that is why treatment needs to be vigilent, in my opinion, not with meds that are 30% efficacy, because MS is not effecting us 30% of the time at 30% strength.

When I was diagnosed it was either take these drugs that make you feel like crap 3-4x week that we know slow the course of the diseas or try all this alternative stuff that "might be beneficial because so and so said, but have not been substanciated. A lot has changed since then especially the general approach to treating MS. The slowing the course is crap, IT NEEDS TO BE STOPPED at all costs, because it does not sop effecting us.

yeb if you're offended by reading your own Dec 8 words (to harry) quoted back to you on Dec 9, perhaps you can appreciate why others might not be jumping for joy at your expressed opinions.

you missed the point completely mfriend. IT would probably be best if you just skip over my posts and don't read them at all, that goes for anyone with the impression that it is my goal here to stir up problems on this site. I am just trying to offer up another way of thinking about this MS thing and problems associated with it.
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Re: treatment vs. no treatment

Postby HarryZ » Thu Dec 11, 2008 11:33 am

I've been quite busy in the last couple of days and have not had a chance to read the messages that have been posted.

yeb4432 wrote:undeniably treatment is better no treatment, you make excellent points about locations of lesions that is one of the mysteries of ms. unless i misunderstood you, copaxone is very effective when given early before the disease has begun to demonstrate progression.


I'm not sure that beginning "treatment" (taking the "approved" MS drugs) immediately is the absolute way to go. Don't forget that it was the Mayo Clinic that suggested patients wait to see the course of their disease before they choose what treatment to take.

As for Copaxone being effective...it wasn't me that said it was useless in the treatment of MS, it was the independent Cochrane Group of scientists that examined the trial data and made that statement. Like all these treatments, each drug company will have very differing views on how effective their competitors medications may be for MS.

My comment was that despite all the interferons and Copaxone being different in their make-up and strength, the results pretty much all seem to be the same at around 30% efficacy. That number seems quite co-incidental for a disease that is characterized by relapse/remission scenarios. Dr. P.O. Behan, in his paper Pathogenesis of MS, indicates that this 30% efficacy rate is very suspicious if not meaningless.

MR evidence is one marker for a medications effectiveness. oI am sure you remember when there was nothing for treatment for MS 20 years ago. It is utterly irresponsible reckless and ultimately dangerous for someone to be given the choice of treatment and not take in in lieu of a therapy not proven, such as bee stings, diet alone, ect. Especially when many of these can be adjunctive to prescrined medications. I am not suggesting this is what you are saying, but you sound very angry and someone could take what you and a number of others on this site way wrong,


MRI evidence, while being one marker, is THE main marker that the the drug companies have used to try and convince us that their medications are great for MS patients. If they relied on the EDSS scale for results, the drugs would never have been approved by the FDA.

I am also going to disagree with your "utterly irresponsible etc." statement on treatment option. When my wife's MS started to progress in the early 90's after 20 years of it being dormant, her neuro (who was involved in the trials involving all the drugs) told her they would not do her any good! He stated that in general, the docs were quite disappointed with the ABC drugs at the time because they weren't seeing the results that they thought they would get. Told her to take two good holidays per year and she would feel better for it than by taking the drugs. And here was a doc who was involved in the trials.

In June 2000, my wife started to use Prokarin (under close medical supervision) and immediately experienced huge symptom relief. Her quality of life improved hugely and there were no side effects. This worked wonders for her yet according to your opinion, this was irresponsible! You can't paint anything or anyone who suffers from MS with one brush. The disease is so diverse and effects everyone so differently that there isn't any one choice. Even the MS docs have differing opinions and that is going to continue as long as nobody knows what causes the disease.

Let's just say that after 45 years of following MS research I can tell you that I have seen the "not so good" effects that the CRAB drugs have on MS patients...both from a personal situation and from reading a lot. While some patients appear to do well with these medications, others do very poorly. The results are all over the map...just like the disease itself.!

Harry
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