Would you agree to a DMD under these conditions?

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Re: Would you agree to a DMD under these conditions?

Postby ElliotB » Fri Apr 11, 2014 4:34 am

If you have not already done so, you should also check into Dr. Tery Wahls' program. I discovered her well after I had begun my 'program' and was pleasantly surprised how similar her protocol and mine are.

I like to eat as well! At this point, it is extremely important to eat the right foods, and plenty of them!

“Let food be thy medicine and medicine be thy food”
― Hippocrates
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Re: Would you agree to a DMD under these conditions?

Postby melko321 » Fri Apr 11, 2014 9:28 am

The name rings a bell,but I can't say I know any details. Thanks for the tip, I will check her programme out.

Hippocrates sure knew his business. :)
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Re: Would you agree to a DMD under these conditions?

Postby DrGeoff » Fri Apr 11, 2014 3:22 pm

want2bike wrote
DMD are used for temporary relief so if you are not experiencing any problems I do not see why you should be on the DMD. DMD have bad side effects and do not stop the progression of MS.

This statement is, of course, totally wrong.
DMDs/DMTs are most definitely NOT used for temporary relief. Their purpose is to modify the progression of the disease, and the injectables all have similar results: an average reduction in the number of relapses by about 30% and a similar reduction in the severity of those relapses that do occur. Starting one now could be regarded as a preventative measure.

All of the DMDs have some side effects, but these tend to mirror MS itself - everybody is different, and a lot of people do not get any real side effects at all. Of all of them, Copaxone generally has caused less side effects - but some people have had bad reactions to it. I wish I had started Copaxone earlier.

My own experience was three relapses in the six months before starting Copaxone, one four months after starting, another four months after that, and none since. The only side effect I have had is a runny nose. I chose the Copaxone to avoid the flu-like symptoms of the interferon based DMDs - but others have only had mild flu symptoms.

Of all the "diet-based cures" that of Terry Wahls does rather stand out. First, she is not afraid to publish in recognized peer-reviewed journals; second,she proposes a complete protocol, not just a diet. Google and look at her website

LDN is not yet accepted by the medical profession (no formal trials) but many people have found that it is beneficial - notably with regard to bladder control. Quite a few take LDN along with a recognozed DMD without any problems. Google the LDN Trust for more information.

Geoff
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Re: Would you agree to a DMD under these conditions?

Postby ElliotB » Fri Apr 11, 2014 4:19 pm

"Their purpose is to modify the progression of the disease"

I do not believe this is necessarily true. The primary purpose of DMDs is to prevent relapses. They are not necessarily effective in slowing the progression of MS. DMDs can possibly slow disability progression because of the reduction of relapses but I don't believe there is any evidence that it slows the actual progression of the disease from one stage to another.
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Re: Would you agree to a DMD under these conditions?

Postby melko321 » Fri Apr 11, 2014 10:55 pm

Yes, I've also read on more places than one that there is little evidence that DMDs have any impact on disability. The only real reason to use them,it seems, is the reduction of relapses, as Kronk says. And,of course, the hope that in one's specific case they just might work miraculously...
There is in all probability someting else at work in MS, not only the lesions and maybe even not only autoimmunity, but those are the only things we can try to influence through DMDs.
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Re: Would you agree to a DMD under these conditions?

Postby zjac020 » Sat Apr 12, 2014 2:37 pm

I'm CIS since 11 months ago. At the time of my first relapse I was almost 33. I had weakness on my right side and I right dropped foot. mrIs then discovered one lesion on the cervical spine (explains the bout) and a few old lesions on the brain.

I haven't started with DMDs simply because having worked for pharma projects I knew some of the "behind the scenes" and even copaxone is quite toxic, even if it doesn't give you side affects. I agreed with the neuros that I'd start on DMDs if there were any advance in lesions of subsequent relapses (scary to say that I know). However I did make serious lifestyle changes.

I had suspicions that I didn't tolerate wheat to well which I was eating daily for over 15 years (Weetabix). Food intolerance tests confirmed that I had high intolerance to wheat and all dairy. My digestions have much improved. I also had junk food or processed food more often than a healthy person should (although i was never overweight). Apart from that i hace never eaten vegetables. I never exercised regularly and since my early twenties barely ever got more than 6 hours sleep regularly. I changed all this around rather drastically after diagnosis. I believe there is a lot to Swank and Terry wahls. What swank achieved so long ago now...is damn right impressive.

I did extensive lab analysis (Jimmylegs on this forum is the expert here) and saw that I had things out of place all of which improved upon changing my diet. I believe vitamin d levels are heavily involved (look up what Dr Cicero, and other doctors that follow his protocol, has achieved with high doses of vitamin D in thousands of patients in Brazil and other places) I acted upon this quickly very soon after diagnosis and have upped my levels considerably. I also started taking LDN 4-5 months after the first and only event for now. I also started with supplements soon after diagnosis and continue with lots.

I tested for heavy metals and found I had high mercury and very high lead. Look up the effects that this combo can have on the nervous system...you'll come across demyelinating lesions, but no neuros are interested in this. Andy Cuttler has also commented on the high incidence of high levels of these metals in MS sufferers.

Finally I was interested in CCSVI. My brother many years ago (approx 11) was told that poor blood flow to his brain in the cervical region probably explained his dizzy spells. When I had the event, just before (literally minutes before) I hadw been carrying considerable weight and felt the burden/pressure in the neck area. I've also always had bad posture and my mris found cervical lordorsis, which doesn't help with any possible cervical spine issues. Just recently I found a doctor here in Spain that as far back as almost 15 yrs ago was performing something similar to CCSVI and was again finding that half of patients were having long term improvement. He looked at my blood flow with ultrasound and found that on the right sides (where my muscles are clearly tighter, where my cervical lesion is, the same side that I had the weakness during the event, and where the majority of lesions in my brain are found) had a noticeably reduce blood flow and even more noticeable when my arm was raised). I think this is no coincidence.

What I found is that even the best neuros are generally Only interested in DMDs. That is where the money is, where the research is and where there career objectives can be met. There is no serious for neuros in taking a serious look at diet, exercised, blood flow, etc. I think there is no silver bullet to this disease but the medical world is intent on finding one. I think there are several factors at play and in the cases where an over active immune system supposedly attacks myeling..then copaxone may be of great help. But in a case where the issue is poor blood flow to the brain..DMDs may only make matters worse. I know a friend who had great improvement and disease remission for the last eight years with CCSVI, and he started progressing more after starting copaxone. It's just one example, I also know others were copaxone helped in greatly reducing relapses. It's a pity doctors don't test MSers for a lot more things in terms of blood work, musco-skeletal, etc. I think they'd find areas that can be improved prior to starting on DMDs.

A neuro (and I have spoken to many of the best here in Spain) once told me that in his many years of experience he was not all that convinced with the DMDs, that he knew that here in Spain 1 in 4 ended up progressing to the more severe stages with disability and that he felt that changing lifestyle factors and maintaining those changes was one of the most importantly factors in disease progression.

I don't know if I'm making the right choice and still question starting copaxone on monthly basis. But I think there are no right answers in MS, and I do know that the most powerful and wealthy companies right now (big pharma) are far from ethical in their objectives. The money is in treating with meds, not curing or even treating with non-pharmaceutical approaches. It's that simple. It's like expecting BMW do convince you to take the bus rather than buying one of their cars...that's not what they are there for.

Sorry for ranting. I guess my point is...you will need to look a lot further into this disease than what your neuro will suggest or what he will himself look into. They simply just don't have the time or motivation to look into your healthy from an integral perspective.

Good luck with what you decide,
Zjac
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Re: Would you agree to a DMD under these conditions?

Postby melko321 » Mon Apr 14, 2014 1:56 am

I'm sorry I didn't respond earlier, I was away from my computer.

DrGeoff, if you are reading this - you say that you wish you had started Copaxone earlier, and that it has reduced the number and severity of your relapses. Would you have started it even if you felt good and didn't have relapses even without it?

Zjac - So you've decided to wait. This philosophy is still valid in my country (Croatia). In order to get a DMD you have to have two relapses within two years of the diagnosis. I have an official dg. based on the tests, but no relapses for over a year. There are,however, ways around that rule, which is why I'm doing all this... research, if that's what we can call it.

Your post is far from ranting, you make so many important points that I think I'll be coming back to it every now and then.

I've come across this wheat (gluten) intolerance many times now, and I must do this test as well, although it is probably good to avoid those foods even if the test comes back normal.
My daily routines weren't much different from yours - no exercise, mostly fried food (not fast food per se, but still far from healthy), only I like vegetables. :)
As for sleep, I don't have insomnia, but my sleep has always been in the lower part of the "normal" range -6-7 hours typically. I've also had a bout of real insomnia at college which lasted for several months, and for which I wouldn't be surprised if that was what led to or at least advanced my MS. Of course, whether it was poor sleep that brought about MS, or vice versa, or those two didn't have much to do with one another, I will probably never know. Like MS, sleep is poorly researched and poorly understood.

As for vitamin D - mine is in normal range, but I've heard many times that MS-ers should boost it to high levels. I will discuss this with a neuro in June (third neuro, by the way, who knows what he/she will say)

CCSVI is usually considered a wild goose chase, but even here an occasional neurologist says that there may be something to it. I have been experiencing something akin to mini-seizures every two-three months for about three years now, and as soon as I was diagnosed with MS I naturally connected those seizures with MS. However, they told me at the hospital that those seizures are not connected with MS, but that I have some sort of "vasovagal syncope", probably connected to a cyst on my pineal gland, and all those things are benign and not connected with MS. I tend to trust doctors, but perhaps a check up on my veins one day would also not be a bad idea. I'll discuss this with that third neuro as well.

After talking to all of you ,I will "attack" that poor neurologist with so many questions he/she will never want to treat me again. :) I understand and agree with your opinion, Zjac, that sometimes we have to be our own doctors. But any test I get from a neuro gets covered by my insurance, and every other must come out of my own pocket, so I'll rather wait for that appointment. And there are so many tests that I am planning to do.
Thank you once again for all the information, it would take months of Googleing if not for this forum and the people on it.
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Re: Would you agree to a DMD under these conditions?

Postby want2bike » Mon Apr 14, 2014 6:30 am

It is important we understand how a drug works before we take it. Copaxone works by limiting the immune reaction. The drug weakens you immune system so you can get other things like cancer. There is a study showing MS drugs do not effect the progression of MS. It may not destroy your immune system in one day. You can take this drugs for years and wake up one day with severe problems. Like the addict who has taken heron all his life then one day he takes an infection and dies. All the MS drugs work by weakening the immune system. That is no secret. If you look at the result from all the people on Ask A Patient who have taken Copaxone you will know what to expect. When you skin turns red and swells up that is a side effect. When you experience pain and have to take a pain pill that is a side effects. That is your body telling you it doesn't like the poison. If you need to temporary fix that is your choice but make no mistake the drug is poison to the body and when you see these so called side effects that is what your body is telling you. If you destroy your immune system you will die.

http://multiple-sclerosis.emedtv.com/co ... tions.html

http://www.askapatient.com/viewrating.a ... e=COPAXONE

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&
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Re: Would you agree to a DMD under these conditions?

Postby melko321 » Mon Apr 14, 2014 9:08 am

Thanks, want2bike, but I would still like to hear from someone who has taken one pf the DMDs, or at least smn with MS who is in a similar situation to mine.
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Re: Would you agree to a DMD under these conditions?

Postby DrGeoff » Mon Apr 14, 2014 3:51 pm

Melko321 wrote:
DrGeoff, if you are reading this - you say that you wish you had started Copaxone earlier, and that it has reduced the number and severity of your relapses. Would you have started it even if you felt good and didn't have relapses even without it?

That is almost what did not happen.
For me, relapses took the form of extreme fatigue. My qualification for a DMT was two relapses within two years. So, when I had two that were 18 months apart - I qualified. That gave me six months to say YES and be within the two-year period. I hesitated. I started to ask questions. I was beginning to focus on Copaxone when the next relapse hit. Then the next one, and then the third. I get over that lot and say YES to a DMT and go for Copaxone. This (like all DMTs) does take a while to be fully effective, but the next relapse is four months down the line. I get over that but I am now having to use a cane to walk with. The last real relapse was four months after that, and is followed by the start of "dropped foot", and the need to use two canes.

When I qualified, my EDSS score was 1.5, a year later and it was 6.5. I think that had I started as soon as I qualified, then I would have avoided at least two relapses and would still only need one cane to walk with. My quality of life would be a whole lot better.

It does not matter a great deal which DMT you chose. The interferon based drugs and Copaxone all have the same average performance (30% reduction in relapses, and a reduction in the severity of those that still occur). The oral ones, and the transfused one are better (and probably have more side effects).

The side effects that you might get from any one of them are impossible to predict. Generally, anything serious will show up within two-three weeks - so you stop. I chose Copaxone because it had less side effects listed, and the ones that were did not bother me. The redness at the injection site stops being a problem within a few weeks and does not even occur after a few months. There was also the thought that it would be easier to build a daily injection into a daily routine - and that has proven to be right.

Now, whether this (or any other DMT has an effect on the progression of MS is as much a matter of semantics as anything else. No DMT will stop your MS from getting worse. If a DMT reduces the rate at which it gets worse - as evidenced by a reduction in relapses, then to me that is an effect on the progression. It can be a complex argument, and you probably need to be able to understand both quantitative and qualitative research, and do a bit of graphic modelling as well to really get a handle on it. I am quite happy to settle for less relapses.
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Re: Would you agree to a DMD under these conditions?

Postby ElliotB » Mon Apr 14, 2014 4:49 pm

You can take this drugs for years and wake up one day with severe problems.

You mean like MS?


...look at the result from all the people on Ask A Patient who have taken Copaxone you will know what to expect.

I did. A 3.5 overall rating, most (but not all) tolerate Copaxone very well. If I were to post my experience, it would be a 5.

www.ooma.com/ca
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Re: Would you agree to a DMD under these conditions?

Postby Kronk » Mon Apr 14, 2014 8:40 pm

ElliotB wrote: If I were to post my experience, it would be a 5.


Same or maybe 4.5/5 :) , some after injection pain and swelling, especially when injecting in areas without sufficient fat, but other than that nothing.

I am actually the healthiest I have ever been in my life, 18 months after starting Copaxone, so it is not impacting my overall health negatively.
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Re: Would you agree to a DMD under these conditions?

Postby melko321 » Tue Apr 15, 2014 1:14 am

Thank you all for your REALISTIC opinions, those are the ones that matter. Even before posting my question I had already pretty much made up my mind about starting with the therapy. Now I'm a step further in that direction. The only rediculous thing about my specific case is that I will have to "overdramatize" two attacks in order to get the DMD, but I don't want to regret not acting on time later down the line.
I'm glad for those of you doing fine on Copaxone, and I hope that further research will yield a therapy for those who aren't.
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Re: Would you agree to a DMD under these conditions?

Postby standingtall » Thu Apr 17, 2014 1:52 pm

Melko321, This is one of those decisions where there is no perfect answer. But be very careful not to dismiss anything too quickly, including any of the dmd's or alternative treatments. I personally know some ms folks who have used both with varying degrees of success. If you believe just a little of what you read, you can make a case for any of them depending on the individuals involved particular symptoms and circumstances. Another way of putting it is, I believe that nutrition alone holds the biggest promise for a good course for me. But, I do not believe that is true for everyone. As you read through the information on this board, as well as other sources you should easily discover why myself and others feel this way.
It would be nice to wake up one day and hear that pharma has found a pill to take that cures ms with no side effects. But I personally do not think that will happen. Meanwhile, many folks are controlling their ms quite well with all sorts of things. They arrive at these things through a lot of trial and error.
Good luck. Sorry for the semi-rant
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Re: Would you agree to a DMD under these conditions?

Postby jimmylegs » Thu Apr 17, 2014 2:23 pm

i think given that we know sooo much about the nutrition issues seen in ms patients, that docs really aren't doing right by their patients not to understand and apply the research that's been done. i think it's extremely wise to optimize nutrients first and then choose an appropriate dmd from there on a case by case basis, if and as needed.
melko in the event that you have some nutrient tests done as a result of your june neuro visit, here is a short list of some of the main 'usual suspects' you could ask for, as well as targets (all mid to high 'normal' range):
serum vitamin B12: aim for at least 500 pg/mL or 370 pmol/L.
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). ...

research to keep in mind if you bring up the subject of nutrition when you see the neuro
Adams, K. M., Lindell, K. C., Kohlmeier, M., & Zeisel, S. H. (2006). Status of nutrition education in medical schools. The American journal of clinical nutrition, 83(4), 941S-944S.
Rosser, W. W. (2003). Nutritional advice in Canadian family practice. The American journal of clinical nutrition, 77(4), 1011S-1015S.
Wynn, K., Trudeau, J. D., Taunton, K., Gowans, M., & Scott, I. (2010). Nutrition in primary care Current practices, attitudes, and barriers. Canadian Family Physician, 56(3), e109-e116.

more info if you're interested in further reading: regimens-f22/topic2489.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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