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.

good dialog people

Postby Cojack » Thu Dec 11, 2008 2:25 pm

Using the MRI as the marker for MS is tantamount to the Entertainment industries use of the Nielsen's ratings all this time. Prior to beginning it/the Nielsen people themselves claimed their system should be used in conjunction with at least 2 others...but the networks preferred one system so they could make enhanced viewer claims no doubt. Listening to a webcast on Health talk-ms blog recently one of the neuro's exclaimed that research for MS was to myopic ...i.e. Endocrinologists, immunologists, etc and i'd like to add one called anecdoteolgist. Someone who actually listens and records what the human being with the disease is conveying to them/rats don't have this ability..his ideas, intuition etc and compiling that data and maybe expediting this process from other angles. I know there's a lot of different things going on right now but it does seem disproportionately neurologically skewed. Trying to fix things down stream rather than up.

jack[/b]
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Postby Lyon » Thu Dec 11, 2008 5:20 pm

oo
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Re: good dialog people

Postby HarryZ » Thu Dec 11, 2008 5:24 pm

Jack,

You certainly have made a lot of good points in your message.

During the 4 1/2 decades that I have followed MS research, I can't count the number of times that I heard the same old stories about the "soon to come breakthrough." Every few years it was the same story with a slightly different twist.

And your comment about the docs not listening to the MS patients....I heard that many times from my wife as she became more and more frustrated at them trying to tell her how she felt and what she should be doing! And then there was the one comment from the regular docs..."oh, she has MS" and everything else she tried to tell them was ignored.

Over 60 years of MS research and they still can't tell us the cause or have anything remotely close to an effective treatment. I think that is the definition of "abysmal"!!

Harry
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thanki s for sharing your story...

Postby yeb4432 » Thu Dec 11, 2008 9:22 pm

Harry

Thanks for sharing you and your wife;s story. Yes, as you know in the early years there unfortunately were no FDA approved treatments available. On top of that I am sorry to hear about your experiences with docs in the early years after he diagnosis. There is a difference between using medications for bettering life (procarin, 4AP, provigil) and DMAs (ABCR, Tysabri).

Cochrane Group stud was highlsuspect at best if it is critically examined. I do not contend that Copaxone is a great med, good first line. It IS excepted within the neuro community that all the injectables offer about 30% give or take a few points. and the difference boils down to s/e's.

The problem with most neurologists is that they really do not think out of the box in terms treating the underlying immune proce ss. Fearing the documented 1/3000 risk of Tysabri which is probably drastically overstated opting to keep patients on the medications mentioned.

I also half agree with the uselessness of MR scaning is only as good as the scanner itself and the radiologists and a techs performing the tests.

How many people have had 3 tesla scanning done?
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Re: thanki s for sharing your story...

Postby HarryZ » Fri Dec 12, 2008 12:00 pm

Cochrane Group stud was highlsuspect at best if it is critically examined. I do not contend that Copaxone is a great med, good first line. It IS excepted within the neuro community that all the injectables offer about 30% give or take a few points. and the difference boils down to s/e's.


Copaxone's competitors contend that it is not a very good medication either. Then again, in the marketing war of MS pharma, one has to take those comments for what they are. But the Cochrane Group is an independent group of scientists who have no vested interest in these drugs and simply relate what they find. I have a tendency to believe them a lot more. As for the so-called 30% efficacy of the CRABs....even if one believes that number it is quite lousy for very expensive drugs that give you many bad side effects!

The problem with most neurologists is that they really do not think out of the box in terms treating the underlying immune proce ss. Fearing the documented 1/3000 risk of Tysabri which is probably drastically overstated opting to keep patients on the medications mentioned.


I won't disagree with your comment on the neuros not thinking outside the box. Because they have been in this "box" for so many years both in research and treatment, look where we are today in respect to advances in MS treatments. Why does the word "abysmal" keep on coming to my mind on this one?

Tysabri....I won't comment on that drug....most people on this forum know of my concern for this medication. I'm afraid we've only seen the tip of the iceberg of the problems that his drug is going to cause.

I also half agree with the uselessness of MR scaning is only as good as the scanner itself and the radiologists and a techs performing the tests.

How many people have had 3 tesla scanning done?


Probably not very many...likely because of the availability and cost.

Harry
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Postby catfreak » Fri Dec 12, 2008 8:11 pm

HarryZ and yeb4432,

I have been have a 3 Tesla MRI scan for about 3 1/2 years. It definitely makes a difference. My Neuro insists on the 3 T Scan.

CF
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Postby HarryZ » Fri Dec 12, 2008 11:15 pm

catfreak wrote:HarryZ and yeb4432,

I have been have a 3 Tesla MRI scan for about 3 1/2 years. It definitely makes a difference. My Neuro insists on the 3 T Scan.

CF


What differences are you seeing? Thanks.

Harry
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Postby RuSmolikova » Sat Dec 13, 2008 2:34 am

http://www.auntminnie.com/index.aspx?se ... emID=74566

See:
3-tesla scanning has greatly enhanced spatial resolution compared to older MRI technology. For example, a head scan with a 0.3-tesla or 0.6-tesla scanner provides sections of 10-mm thickness. A 1-tesla MRI reduces the thickness to 7 mm, and a 1.5-tesla system thins the sections even further to 5 mm. With 3-tesla, Runge is acquiring sections of the head between 3 mm and 4 mm in thickness, and acquires them in less time than the 1.5-tesla system.
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3T

Postby yeb4432 » Sun Dec 14, 2008 9:37 pm

3T scanning is important and it also relates to Tysabri and newer agents on the horizon and here's how;

3T scanning offers essentially double resolution of 1.5. This allows us to definitively not say "this is a 'light' case of MS or there is no change from previous scan....
-This is important because as newer and more expensive medications come to market insurance carriers need to see this evidence of disease. Not only that 3T scans allow clinicians say "whoa, there are not two small lesions here in your C spine , but on continuous lesion through it. An ominous sign for some one not on treatment.

Although some may disagree but spine MRs are so crucial early in diagnosis and should guide the direction of treatment. Example; 40 year old woman with newly diagnosed with a few small lesions in her head should be treated a little different than a 19 year old woman with a big lesion at C1/C2 of her spinal cord.


IT sounds as though a number of people here need to find neuros with a more progressive approach.
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Postby patientx » Mon Dec 15, 2008 7:50 am

Example; 40 year old woman with newly diagnosed with a few small lesions in her head should be treated a little different than a 19 year old woman with a big lesion at C1/C2 of her spinal cord.


In what way should the treatment be different?
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Postby Cojack » Mon Dec 15, 2008 11:38 am

Zeb,

I've had a brain & cervical MRI, i think it was 3.0...at UBC Univ of British Columbia....they just found a hand full of non specific hyper intensities...no specific lesions (could be sub clinical the doc said) i consulted with a US Neuro who said a Thoracic MRI should be performed/but that a spinal one wasn't necessary...i'm late 40's....they say they won't Re MRI me for another half year....i guess the question is when you say spinal/you're not just referring to cervical, are you? And why don't they include a spinal when doing MRI's as protocol?

Truly,
Jack
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Postby notasperfectasyou » Mon Dec 15, 2008 2:48 pm

By definition, researchers are working on MS because we don't know answers to most all the stuff we come here to discuss. Period.

It's not as easy as polio was.

Those are obvious statements, yet we often put too much weight on what doctors tell us, what drug companies tell us and what trials tell us. Nobody knows.

We as consumers don't manage our own expectations. Here's what I mean. We grow up being taken to the doctor when we are sick. The doctor tells Mom and Dad what to do and we feel better. Doctors also fix broken bones and they miraculously know when we are not brushing our teeth. From childhood we grow to have an enormous respect for the intelligence of doctors.

Somewhere along the way you found out about Santa, the Tooth Fairy and later on you might have even realized that your Dad didn't know everything and wasn't as smart as you thought. But, many of us never adjusted our expectations of doctors.

if you're still with me, please just stick with this idea ...... since when did I become brief?

I'm an accountant. I do nonprofit organization accounting. EVERYONE expects me to know about income taxes. I don't know much about income taxes. I know about nonprofit organization accounting. Every year the same friends call me anyway with tax questions. This will start in about 3 months. Even with an annual disclaimer, folks think like maybe next year Ken will be a real accountant and know about income taxes.

Adjusting the expectations of others to reality is difficult. Even when it seems ...... Obvious.

The crowd here, I believe, is unique because we have taken the time and interest to come to a place like TIMS because we think there is more to know than what the doctor told us. Perhaps I'm a pesimist, but I feel that we are a small minority. I think the majority of folks take what the doctor says as golden, like Santa. I respect everyone here for wondering if there are other answers that we don't get from the neuro.

We can't fault the neuro. They are doing their jobs. The nonprofit I work for has lost A LOT of money in the stock market. I took a lot of my retirement plan out of mutual funds in September because I was uneasy about the climate. But, that did not mean that I, as the organization's accountant, could go to the boss and tell him we needed to change the corporate investment strategy. Why? Not my job description? Not my area of expertise? Not what I was hired to do? Not the way my role is defined? Would it be different if I was the copyroom guy instead of the accountant? Some of that or none of that, I'm just asking you to think about it. The stock market has been studied for decades, can't you tell me what it will do tomorrow yet?

My reasoning is that we cannot get bogged down in the game I call (say this to yourself with a deep smartass tone), "I Divest Myself Of Personal Responsibility For Me". Oh how human it is to play IDMOPRFM. I did what the doctor told me to do. I did what the lawyer told me to do. I did what the accountat told me to do. I seen it on TV, I did, I know it's true. Or my neighbor the genius he told me too. OMG, all you need in this country to have instant credibility is live next door to someone else!

My first point, it's all advice. Sometimes we pay for it, sometimes it's free. Sometimes it's right and sometimes it's wrong. Sometimes we get a bargain and sometimes it's costly, very costly. But, don't be playing IDMOPRFM because then you're running on luck and one day it will run bad. Bring your knowledge and common sense to the decisions you make and OWN THEM! If you're smart enough to be a TIMS member, I'm sure you know this and it's part of your life. I love this place for many reasons, one of them is the willingness to think that infects us all in such a positive way.

My second point, (you knew there was another one, right?) don't give up because you don't know. None of us know, but that don't keep us from trying. Know one wants to be called a quiter, but that also requires behavior that isn't easily confused with quitting. Think, read, try stuff, DISCERN, do the best you can for you and share your insights with us here. I think the original topic was about not pursuing any effort to help yourself feel better. That sounds like quitting to me. Ken
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Postby Lyon » Mon Dec 15, 2008 3:20 pm

oo
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Postby HarryZ » Mon Dec 15, 2008 5:42 pm

Ken,

The crowd here, I believe, is unique because we have taken the time and interest to come to a place like TIMS because we think there is more to know than what the doctor told us. Perhaps I'm a pesimist, but I feel that we are a small minority. I think the majority of folks take what the doctor says as golden, like Santa.



You have no idea how accurate you are on this comment. I've participated in several MS Forums for some 10 years now. On many occasions I would make comments about what I had read on these forums to many MS patients in the cities where I lived during this time. The number of these people that had absolutely no idea that these forums existed was astounding! And in almost every case, these patients believed everything their doc or neuro told them.....without question.

So the people here are in a huge minority of MS patients so you are not being pessimistic at all!

BTW, you wrote a great message.

Harry
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Postby Cojack » Mon Dec 15, 2008 6:20 pm

Not pessimistic....but acknowledging an incredible resource at our disposal...case in point...this is an excerpt from a article today...


'In the late 1990s, Voskuhl discovered that the female sex hormone, estriol, could suppress MS-like symptoms in a mouse model of the disease. Estriol is used in Europe for hormone replacement therapy in post-menopausal women and is considered one of the safest estrogen hormones. In 2003, Voskuhl ran a pilot study giving estriol to 10 nonpregnant women with MS and found that the women showed an 80% decline in inflammatory lesions in their brain.

Because drug companies are rarely interested in funding trials for compounds not protected by patents, Voskuhl has spent five years piecing together funding from the National Institutes of Health and the Southern California Chapter of the National Multiple Sclerosis Society to run a two-year trial at several sites with about 130 patients. She is still enlisting patients for this trial, in which patients taking the approved therapeutic Copaxone (glatiramer acetate) are compared with those taking Copaxone and estriol.'

Taking this long to set these trials up is inhumane....

OUR NEXT STEP IS TO ORGANIZE A POLITICAL GRASS ROOTS LOBBY GROUP

Jack
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