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frodo wrote:Hi MSBOB

my question is open for you too. As Mr Colros refuses to answer, maybe you can help me with my doubts.

I repeat the question. Being CRABs drugs only able to reduce gadolinium enhanced lesions, with no established relationship to MS progression, do you consider acceptable to use this kind of drugs?

I just started Rebif this week. Yeah I had a real hard time accepting whether or not I should go on it, if it was effective, and if it was worth it. I felt a bit stripped of independance going on it. I read the studies over and over. I read the studies from the Mayo that assault of viruses on the brain can stimulate hormones to trigger remylenation. Rebif makes soft claims to do this.

The studies are not terrific, but better than Copaxone. I am all about dietary and supplement regimins, and I will probably settle on them if Rebif doesn't work out.

I suppose that I believe that the drugs work in the ways that fit my understanding of MS. The trials have been done over and over since the 1990s, and the mainstream neuros support it as front line medicine. It is more than I can say for CCSVI which involves surgery and has not proven anything substantial. It doesn't fit what is known about the distribution of the disease, the body's responses, and has not had enough critical review to support running out and playing with cardiovascular surgery.

For people who are accustom to wait and see games, it seems really knee jerky to run off and get surgery.

That is all I have to say about it.

frodo wrote:Hi MSBOB

my question is open for you too. As Mr Colros refuses to answer, maybe you can help me with my doubts.

I repeat the question. Being CRABs drugs only able to reduce gadolinium enhanced lesions, with no established relationship to MS progression, do you consider acceptable to use this kind of drugs?

Hey Frodo I think what you are saying, and to clarify for Lyon,is that studies show that people on CRABS GENERALLY have less gadolinium enhanced lesions over time than those who do not take them.

I would have to disagree with you that there is no established relationship between taking the CRABS and long-term MS progression. Recently 15 year follow-up studies have been released showing that people on the drugs have less disability than those who choose not to take the drugs. If you want I can link you to some of these studies. From what I have read from long-term follow-up studies is that CRABS GENERALLY are safe to use although in all honesty they have not been around that long(early 90's?). Do i consider it acceptable to use these kind of drugs? Absolutely. Until something better comes along this is pretty much all we got in the way of medications although it appears that there are some pretty effective medications in the pipeline which may make the discussion of whether CRABS are worth taking mute in the very near future.

MSBOB wrote:
For people who are accustom to wait and see games, it seems really knee jerky to run off and get surgery.

That is all I have to say about it.

Unfortunately, MS is not a "wait and see game'. Most PwMS don't have the luxury of waiting 10 years for all research to come through. Some people don't even have a few months. I also don't see MS as a game, but to each his own. But before you cast judgment in condescending tones on those who decided to have the procedure, know that we all weigh risk differently. Your situation may be different than someone who is faced with a rapid deterioration in health. I hope in the future you can respect the tough decisions people have to make regarding this matter.

ikulo wrote:Unfortunately, MS is not a "wait and see game'. Most PwMS don't have the luxury of waiting 10 years for all research to come through. Some people don't even have a few months. I also don't see MS as a game, but to each his own. But before you cast judgment in condescending tones on those who decided to have the procedure, know that we all weigh risk differently. Your situation may be different than someone who is faced with a rapid deterioration in health. I hope in the future you can respect the tough decisions people have to make regarding this matter.

Exceedingly well said. Thank you.

Rokkit wrote:

ikulo wrote:Unfortunately, MS is not a "wait and see game'. Most PwMS don't have the luxury of waiting 10 years for all research to come through. Some people don't even have a few months. I also don't see MS as a game, but to each his own. But before you cast judgment in condescending tones on those who decided to have the procedure, know that we all weigh risk differently. Your situation may be different than someone who is faced with a rapid deterioration in health. I hope in the future you can respect the tough decisions people have to make regarding this matter.

Exceedingly well said. Thank you.

I agree. Well said. I respect your opinion. Like I said before, if I were further down the road and have suffered longer I may have volunteered. I don't want to talk about this anymore, because my opinion is very different than yours and the conversation is not going too be helpful for many reasons that I won't go into.

You asked my opinion and I gave it. ("game" was a poor figure of speech, not intended to be disrespectful.)

Peace

Lyon wrote:

frodo wrote:Thanks for your answer Lyon, but still none of them claims to have influence in the long term. It could happen that they help in the short term making things worse later. Therefore the question is still open. Is it ethical to diagnosize these things with unknown long-term effects?

I'm sure not an expert and I doubt I can supply the answer but I don't understand the question. When you say "diagnosize" do you really mean "prescribe"?

Ups, sorry. I am not a native speaker. Anyway that does not change anything. Is it ethical to prescribe these things with unknown long-term effects?

About scorpion post:

Recently 15 year follow-up studies have been released showing that people on the drugs have less disability than those who choose not to take the drugs.

Did you say "those who choose not to take the drugs"? That is not very double blinded, is it?

Do i consider it acceptable to use these kind of drugs? Absolutely. Until something better comes along this is pretty much all we got in the way of medications although it appears that there are some pretty effective medications in the pipeline which may make the discussion of whether CRABS are worth taking mute in the very near future.

You consider acceptable that kind of drugs with no proof at all about its validity. You consider that reducing gadolinium lesions and reducing relapses has to be good for the brain in the long term, but you don't have any double blinded study to support it. You are exactly in the same position that people that thinks that improving blood flow has to be good for the brain.

At this moment the long-term effects of angioplasty are equally unknown as for any other available treatment.

frodo wrote:Ups, sorry. I am not a native speaker. Anyway that does not change anything. Is it ethical to prescribe these things with unknown long-term effects?

Of course you are not a native speaker, if you are from Middle Earth. Hobbiton? ;)

I have no answer to your question....

.........

frodo wrote:

Lyon wrote:

frodo wrote:Thanks for your answer Lyon, but still none of them claims to have influence in the long term. It could happen that they help in the short term making things worse later. Therefore the question is still open. Is it ethical to diagnosize these things with unknown long-term effects?

I'm sure not an expert and I doubt I can supply the answer but I don't understand the question. When you say "diagnosize" do you really mean "prescribe"?

Ups, sorry. I am not a native speaker. Anyway that does not change anything. Is it ethical to prescribe these things with unknown long-term effects?

About scorpion post:

Recently 15 year follow-up studies have been released showing that people on the drugs have less disability than those who choose not to take the drugs.

Did you say "those who choose not to take the drugs"? That is not very double blinded, is it?

Do i consider it acceptable to use these kind of drugs? Absolutely. Until something better comes along this is pretty much all we got in the way of medications although it appears that there are some pretty effective medications in the pipeline which may make the discussion of whether CRABS are worth taking mute in the very near future.

You consider acceptable that kind of drugs with no proof at all about its validity. You consider that reducing gadolinium lesions and reducing relapses has to be good for the brain in the long term, but you don't have any double blinded study to support it. You are exactly in the same position that people that thinks that improving blood flow has to be good for the brain.

At this moment the long-term effects of angioplasty are equally unknown as for any other available treatment.

I asked you if you wanted me to post some of the studies I was referring to but obviously you are more interested in arguing. Please in the future if you do not want a question answered, do not ask it. I was not trying to prove you wrong I was just stating what I have read. Here is one of the examples if you are interested......

http://www.zenopa.com/news/800123220/Ba ... trial_data

Recently 15 year follow-up studies have been released showing that people on the drugs have less disability than those who choose not to take the drugs. If you want I can link you to some of these studies.

My neurologist(s) refused to prescribe anything at all to me after I had become secondary progressive. Except mitoxantrone, and 4-5 years later, I had a heart attack. Both I and my wife asked them on numerous occasions, and my health insurance covers it. I see it as some kind of punishment for taking LDN against their orders.

They have done this since 2005 or so, and in that time I have lost the ability to walk and play guitar. My last neurologist told me to stay in the wheelchair. I have not been in it much since the Procedure. I use a walker.

scorpion wrote: I asked you if you wanted me to post some of the studies I was referring to but obviously you are more interested in arguing. Please in the future if you do not want a question answered, do not ask it. I was not trying to prove you wrong I was just stating what I have read. Here is one of the examples if you are interested......

http://www.zenopa.com/news/800123220/Ba ... trial_data

Of course I wasn't interested in the article since your sentence implied that the study wasn't double blinded. In the report you just sent me they say it was blinded for five years, but it is dated 2010. Therefore they have been prescribing this drug for 20 years with not enough data. And they still have no data for the other CRABS. And people with chronic problems, like non-ccsvi veins malformations were probably excluded from the study.

I was not trying to say that those drugs don't work. I was just trying to point out that a patient always has to make a leap of faith while looking for treatment. That is the same both using CRABS or angioplasties.