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Postby Brainteaser » Mon Sep 18, 2006 10:45 pm

Hi Marie,
FYI, my MS profile mirrors yours. I have had only 4 lesions of the spinal cord 'forever'. As with you, I have progressed to walking with aids. Recently, my neurologist suggested that my lesions are incidental to my progression and that axon damage (difficult to detect on MRI's) is likely. I also have right footdrop but thankfully, not RA.
Regards,
Phil.
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Postby ljm » Tue Sep 19, 2006 8:41 am

Lyon, re clusters, my sister has progressive MS, my brother has celiac disease, my mother died few years ago after being tentatively dx'd with lupus, and then of course there is me. The only other thing running consistently through our bloodline is thyroid problems (of all kinds, goiter, cysts, infections, hypo, hyper). That last bit is just unusual, I don't think its relevant.
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Postby HarryZ » Tue Sep 19, 2006 8:54 am

My wife's MRI's back in the late 90's were pretty much the same as Marie's and Phil's. She took part in a clinical trial involving a drug that stopped and reversed the MS in that poor mouse.

The lesions discovered on the base line MRI were old and non-active yet her MS had progressed to SPMS by that time. For the 11 months that she was on the trial, they didn't change. So much for the heavy importance trials place on the number of lesions!

BTW, the trial was stopped when the drug ended up causing the death of one of the participants when it attacked his heart. Fortunately Marg was on the placebo.

Harry
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Postby mrhodes40 » Tue Sep 19, 2006 1:39 pm

the 11 months that she was on the trial, they didn't change. So much for the heavy importance trials place on the number of lesions -snip-Marg was on the placebo


Gee that placebo worked pretty well! I wonder what it was! No progression of lesions in 11 months! I wonder how soon it will be out!..... :wink:

Bob I thoroughy enjoy your posts! I see you as questioning and open in a good way.
but it IS hard to debate with a person who has no common ground with the autoimmune theory especially if you think their point of view is plain dumb as some seem to. to me this is naivite...or contempt prior to investigation

In my defense I would say that if you speak with an honest neurologist they will admit that autoimmunity is a theory that is unproven. My first neurologist was a researcher as well and he said that MS is not autoimmune in his opinion, and there are considerable numbers of authoritative peer reviewed medical papers on just that subject as well, so these experts are out there. I will not bother citing them here, though I have read and understand them and I find them convincing.

So, not everyone thinks MS is autoimmune, though all the pharmaceutical companies are using it as a working model and they actively fund research in that arena. Marketing budgets make sure we all hear a lot about that.

The problem is that once a person like myself who needs treatment decides after investigating it that nonautoimmune models are correct-and for me it is simple math; too many patient years between Mom and I with unacceptable results-then you have few resources for treatment. I take copaxone, a careful diet, and antibiotics, so I am fighting the good fight according to my lights, and covering my bases.

Thank you for oppportuinity to share my rationale. Interesting Phil and Marg are both like me, few lesions. I find it utterly bizaar to be in the situation where my doctor is looking at my MRI and discussing how good it looks when I am progressing. It seems insane. Early on I was told I'd probably never need a cane or anything since the lesions did not increase at all and I could still jog at 6 years. Not true at all! :cry:

I am completely willing to believe that some folks like Raven have something autoimmune considering his great experience with Campath and I potentially have something else considering my failure with immunosuppression and my lack of inflammation with huge losses in ability anyway. Also I am willing to say I have NO IDEA what anyone else has. But this much I know is true: I am not the first nor will I be the last person to discover that reducing inflammation has done nothing for me, the question is why....
marie
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many diseases

Postby gwa » Tue Sep 19, 2006 1:52 pm

We may have many different diseases classified as "MS" because the diagnosis for MS is subjective, and not defined by a conclusive test.


From my readings, about 15% of MS patients are thought to be wrongly diagnosed with the disease. This would account for therapies that don't do piddle for many of us.

With the recently published findings that more damage is occurring inside the gray and white matter and less in lesions, I don't understand the necessity for multiple MRI's let alone using them as a diagnostic criteria for MS.

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Postby Lyon » Tue Sep 19, 2006 4:11 pm

oo
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Postby Brainteaser » Tue Sep 19, 2006 5:07 pm

Bob,
'Possibly' their progression has stopped. Who knows how long things will last? What are the actual figures? I have heard of only one person, so far with significant benefits from Tovaxin. The experts could have claimed for my first 10 years of MS that I was not progressing, but now is a different ballgame. Hopeful claims regarding MS treatments are sure to attract public research funding. Do you think maybe you are in a 'honeymoon period' regarding MS treatments? Sadly, some of us are a little more streetsmart and sceptical.
Regards,
Phil.
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Postby Lyon » Tue Sep 19, 2006 6:17 pm

oo
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Postby robbie » Tue Sep 19, 2006 6:48 pm

I am saying that without a doubt things look better to me than they have since I've been watching.

they were saying that in the 70's and will be saying it in 2040..Is streetsmarts the same as common sence...
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Postby Lyon » Tue Sep 19, 2006 6:55 pm

oo
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Postby dignan » Tue Sep 19, 2006 7:30 pm

Robbie,

OK, I'll stick a stake in the sand: there's NO WAY this diseases makes it to 2040 without a cure under the onslaught of research that is happening now and will happen in the coming years. The cure will come long before 2040. We know so much more about the disease today than we did 10 years ago. The rate at which we are learning new, important details is accelerating. Keep in mind that there is a substantial lag between the day something is discovered in the lab and when a treatment is available (probably around 12 years if we're lucky). So the treatments in the advanced stages of clinical trials right now are based on our knowledge of MS 8-12 years ago by and large.

Pessimists can always point out that we "haven't figured it out yet", and we don't know if it's autoimmune or not. My take on those statements is: the day we figure MS out is either just before or just after the day we have the cure. Not every theory will pan out, not every treatment will pan out, that doesn't mean we're not making substantial progress. It is frustratingly slow, I'll grant you that, but progress is happening.
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Postby HarryZ » Tue Sep 19, 2006 8:03 pm

Marie,

Gee that placebo worked pretty well! I wonder what it was! No progression of lesions in 11 months! I wonder how soon it will be out!..... :wink:


They told Marg when they took the first MRI for a base line, it looked like the lesions hadn't been active for at least 4-5 years. Yet her MS was slowly marching on despite the "great pictures" of her brain!!

And for the duration of the trial, nothing changed as she had 11 MRI's taken. She may have to have another MRI in the coming months because she is having problems with her optic nerves in both eyes. If this happens, it will be interesting to see what if any change has taken place.

Bob I thoroughy enjoy your posts! I see you as questioning and open in a good way.


Too bad that not everyone saw my posts that way :D

In my defense I would say that if you speak with an honest neurologist they will admit that autoimmunity is a theory that is unproven.


Back in 2000, Marg had a long talk with her neurologist about the lack of progress of MS research. He told her privately that MS docs in general were very disappointed in the CRABs and they simply were not doing what they thought was going to happen by using them. Of course he would never say this publicly since it was the CRAB makers that were providing the millions of dollars in grant money.

My ideas of MS are very similar to yours, especially when it comes to the auto-immune theory. Waste of time in my opinion to continually explore this avenue but that's where the docs have been for years and that's where most are going to remain for many years.

Harry
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Postby Brainteaser » Tue Sep 19, 2006 11:29 pm

Hi Dignan.

'Pessimist'?....... guilty as charged, Dignan! :wink: ........... So, what do we now know about MS that we didn't know 10 years ago? Not a lot, from what I can see. It seems to me that medical science is continuing to follow the path that it has followed for quite some time and as is said "If you don't know where you're going, then any road is the right road!".

Giving the medical scientists to 2040 should be fairly safe. You and bromley might be the only ones still around here at ThisIsMS, by then! :wink:

I accept what you say as simply your (hopeful) opinion, Dignan but I don't think there's much to support it in Western science. Personally, I think the answers may come within that timeframe, but probably from Asia or somewhere where there is not so much scientific self-indulgence.

Regards,
Phil.
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Re: Definitions

Postby NHE » Wed Sep 20, 2006 4:45 am

Brainteaser wrote:I have heard of only one person, so far with significant benefits from Tovaxin.

The phase IB/IIA study with Tovaxin was rather small if I remember correctly, perhaps 15 or so patients. This might explain the apparent lack of people jumping up and down waving their arms about touting its benefit. For additional information on Tovaxin, you can listen to an interview with CEO David McWilliams. http://www.thisisms.com/ftopict-1442.html

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Postby HarryZ » Wed Sep 20, 2006 6:00 am

Dignan,

OK, I'll stick a stake in the sand: there's NO WAY this diseases makes it to 2040 without a cure under the onslaught of research that is happening now and will happen in the coming years.


That time frame, I would imagine, is pretty safe to offer a guarantee for the answer to MS :wink:

Having said that, I can remember in the mid 70's, early 80's and early 90's docs coming out and saying that there WILL be a cure to MS within 10 years! Not very optimistically, I'm still waiting....and waiting...and waiting.

Although we have a lot more knowledge about MS, this knowledge has brought with it more unanswered questions as to what is causing the problems that are being seen with the gaining of this knowledge. Sort of a "catch 22" scenario.

I wish one could turn back the time clock and say 20 years ago, see where we would be today if the researchers got off the auto-immune kick and explored other areas. What did Einstein say many years ago about futility in science....repeating the same thing over and over again but hoping for a different result!! Isn't this what MS researchers have been doing with the immune-system theory for decades.

I wish I could sound more hopeful for some kind of major advance in MS within the next few years but when you've been around that "elusive corner" as many times as I've been, you learn not to get too excited about what is being announced today.

Harry
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