attacks

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attacks

Postby robbie » Sat Feb 14, 2009 9:40 am

can someone with ms have many attacks close together and then go a long time with none without drugs?
Had ms for over 19 years now.
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Postby lionheart » Sat Feb 14, 2009 11:39 am

Of course, that's what the drugs are for :)
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Postby lionheart » Sat Feb 14, 2009 11:42 am

Sorry, I read 'on drugs'
But still the answer is yes, ms is a thing that has no predictive course, you know, evth is possible, spontaneous remissions are well-known and can last for tens of years. If you're lucky.
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Postby robbie » Sat Feb 14, 2009 12:09 pm

But still the answer is yes, ms is a thing that has no predictive course, you know, evth is possible, spontaneous remissions are well-known and can last for tens of years. If you're lucky.

if this is true how do they tell whats drug and whats not?
Had ms for over 19 years now.
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Postby sou » Sat Feb 14, 2009 1:25 pm

Hi Rob.

They don't. They hope it is the drug. But, AFAIK, a few decades ago, when there were no drugs available, others felt better with time, others worse, others much worse. The same happens today, despite the DMDs.

Normally, a new drug would bring joy to patients, but there is a paradox in MS: New drugs rarely bring hope. On the contrary, new drugs (so far) don't seem to alter the real course of disease. What seems to be improving is the side effect profile. New and nastier.

Until they understand that immune suppression is NOT the way to go, MS will be as devastating as it is today, plus the terrible side effects a compromised immune system can bring. HIV is the perfect immune suppressant. However, MSers that have AIDS still have relapses and disease progression.

A friend of mine had her uterus removed because it was terribly damaged by mitoxantrone. She can have no kids. Her MS is not stable at all. She got wheelchair bound. Somebody could say that she could be worse if she did not take Novantrone. But maybe not. On the other hand, I am sure she would have had kids if she hadn't taken that poison.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby lionheart » Sun Feb 15, 2009 1:46 am

Robbie, this is the one million dollar question!!!!

But still, if you had experienced 2-3 flares in a row and after started interferons were fine...then it must be the drug...
That's why they wait for you to have at least 2-3 flares for the last year to prescribe you any of these. They don't wait enough to see if you'd be one of the lucky guys with the 10-20 years spontaneous remissions. Because any next flare can bring a serious irreversable deficit...And we, I suppose, are scared to wait and see.
If you have had only one flare and none with the next years no one will put you on drugs.
Also almost everybody who'd been on CRAB and stopped say they experienced serious exacerbations right afterwards. Is it the illness, is it the drugs...?

If Petakitty reads this topic, I'd be interested to know, how were things for her after having stopped Copaxone?
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Postby jimmylegs » Sun Feb 15, 2009 5:28 am

sou that was a great post.
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I agree with JL

Postby lyndacarol » Sun Feb 15, 2009 9:15 am

I agree with JL when she said,
sou that was a great post.
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Postby mrhodes40 » Sun Feb 15, 2009 1:07 pm

They hope it is the drug. But, AFAIK, a few decades ago, when there were no drugs available, others felt better with time, others worse, others much worse. The same happens today, despite the DMDs.


I think Sou you have hit it right on, and I think that doctors do not even KNOW what the natural history of MS actually is. I used to have a copy of a natural history paper that was done in Canada that I can't locate (urgh) wherein they had 1000 people they'd followed for 25 years and it showed that a large number of the people were still benign at 20 years, like 17% of them. Yet if you talk to neuro's today they talk as if all people with MS become infantile in months if they do not get every treatment offered, and they offer the fact their patients are not in that state as if this is a significant difference from expected.

This study I found today to reinforces the idea from the lost paper, though in this population 49% took one medication, most taking small temporary doses of things like methotrexate (not proven to work in MS) rather than being it a true natural history study of untreated people. But still half were completely untreated, and treated ones had not much at all, certainly nothing considered really effective.

here

A total of 1562 patients (85 percent) had relapsing–remitting disease initially, whereas 282 patients (15 percent) had progressive disease. In the entire group of 1844 patients, the median time from the onset of multiple sclerosis to the assignment of a score of 4 on the Kurtzke Disability Status Scale was 8.4 years (95 percent confidence interval, 7.8 to 9.6). The median time from onset of multiple sclerosis to the assignment of a score of 6 was 20.1 years (95 percent confidence interval, 18.1 to 22.5), and the median time from the onset of disease to the assignment of a score of 7 was 29.9 years (95 percent confidence interval, 25.1 to 34.5). The median interval from the onset of disease to the assignment of each of these scores was significantly longer (P<0.001 for each comparison) in the group of patients with a relapsing–remitting onset of disease than among those who had progressive disease at onset (Table 2 and Figure 2).



So most people did pretty well for years actually. If you look at the graph in the paper, if you were RRMS only 50% had gotten to a DSS of 4 at 13 years.

the purpose of this study and it's conclusion was
The objective of this study was to determine the influence of acute relapses on the rate of progression of irreversible disability in patients with multiple sclerosis.
---snip--
Conclusions Among patients with multiple sclerosis, relapses do not significantly influence the progression of irreversible disability. (N Engl J Med 2000; 343:1430-8.)


Since all drugs to date are focused on relapses and they are becoming increasingly toxic, you wonder what value they REALLY offer.

It's kind of like we have a cold and we try to determine if the person is still sick by counting the number of sneezes ...........but we gave them sudafed to reduce the sneezes hoping that means something about the cold. :?
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Postby lionheart » Mon Feb 16, 2009 3:38 am

What I have to say here is from my personal experience - after dx-d I had another flare (double vision) and for some time of six months weren't feeling fine at all, although had just started drugs (it's known it takes them at least 6 months to take effect), each time I had some phisical or mental strain I received double vision for some time, then it would pass.
After 6-7 months I started to feel much better up to present, I think it must be the drug, as it was worse before...
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