but my progression was like Sandy's: next to nothing for about twenty years
sarah these two statments confuse meantibiotic regime for aggressive secondary progressive MS
Natural History
-
SarahLonglands
- Family Elder
- Posts: 2209
- Joined: Thu Jun 17, 2004 2:00 pm
- Location: Bedfordshire UK
- Contact:
Rob, why do these two statements confuse you?
Next to nothing means exactly that: my MS began with some numbness in my left leg, followed by the same thing a few months later in the right leg, but for twenty years it progressed very slowly: I had two relapses involving paralysis of my right arm but both repaired themselves within about a month, leaving no perceptible weakness. For the last three years before progression set in, relapses were coming more frequently and there was less complete recovery, then after my strange week all hell broke loose. I did make some recovery from that, but I still was very weak and I then just started getting steadily worse. I ended up again with not eing able to use my right, paintng arm, but this time there was no recovery until six months on, when I stared doxycycline et al.
David, when studying neurology as an undergraduate, thought that all the people he saw with SPMS seemed toxic. This idea stayed with him through his period studying neuropathology under David Oppenheimer and then into his years as a consultant microbiologist. He discovered the research going on at Vanderbilt Medical Center after my diagnosis of aggressive SPMS and thought he would have to try it out, whilst not really believing it would work. Luckily for me and for lots of other people, it did.
Therefore, I only started antibiotics after I had suffered from MS for twenty years. I have had it since I was 24.
Since all this is answering Lionheart as well, I will add that I have never followed a special diet, just avoided anything known to be not good for you, like aspartame and so on. I have also only ever eaten organic, fairly treated meat, but primarily for the sake of the animal, not for health reasons. I have always drunk a little alcohol as well.
Sarah
Quote:
next to nothing for about twenty years,
Quote:
antibiotic regime for aggressive secondary progressive MS
Sarah these two statements confuse me
Next to nothing means exactly that: my MS began with some numbness in my left leg, followed by the same thing a few months later in the right leg, but for twenty years it progressed very slowly: I had two relapses involving paralysis of my right arm but both repaired themselves within about a month, leaving no perceptible weakness. For the last three years before progression set in, relapses were coming more frequently and there was less complete recovery, then after my strange week all hell broke loose. I did make some recovery from that, but I still was very weak and I then just started getting steadily worse. I ended up again with not eing able to use my right, paintng arm, but this time there was no recovery until six months on, when I stared doxycycline et al.
David, when studying neurology as an undergraduate, thought that all the people he saw with SPMS seemed toxic. This idea stayed with him through his period studying neuropathology under David Oppenheimer and then into his years as a consultant microbiologist. He discovered the research going on at Vanderbilt Medical Center after my diagnosis of aggressive SPMS and thought he would have to try it out, whilst not really believing it would work. Luckily for me and for lots of other people, it did.
Therefore, I only started antibiotics after I had suffered from MS for twenty years. I have had it since I was 24.
Since all this is answering Lionheart as well, I will add that I have never followed a special diet, just avoided anything known to be not good for you, like aspartame and so on. I have also only ever eaten organic, fairly treated meat, but primarily for the sake of the animal, not for health reasons. I have always drunk a little alcohol as well.
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
-
SarahLonglands
- Family Elder
- Posts: 2209
- Joined: Thu Jun 17, 2004 2:00 pm
- Location: Bedfordshire UK
- Contact:
Rob, no, no progression since starting abx back in 2003. There were a few bumps along the way, though, when I might have thought it was all getting worse again, but seeing the next MRI proved that I was worrying needlessly.
I really hope that Zamboni's work will lead to something that might help people lke you, perhaps alongside antibiotics, because I really believe an infection must be at the root of all this, otherwise why should my disease have been stopped in its tracks just by taking a mixture of three antibiotics?
Sarah
I really hope that Zamboni's work will lead to something that might help people lke you, perhaps alongside antibiotics, because I really believe an infection must be at the root of all this, otherwise why should my disease have been stopped in its tracks just by taking a mixture of three antibiotics?
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
-
cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
Me too, Sarah! Infection must have been at the root of your probable stenoses, and certainly your MS. The question is, will it be everyone else's? Hoping we'll have more answers this year, as I know you and David are, too.Anecdote wrote: I really hope that Zamboni's work will lead to something that might help people lke you, perhaps alongside antibiotics, because I really believe an infection must be at the root of all this, otherwise why should my disease have been stopped in its tracks just by taking a mixture of three antibiotics?
Sarah
I thought David's comment about the "toxic" presentation of SPMSers was spot on. That was what I kept asking the neuro...why is my husband so sick? Why the sky high liver enzymes, why the petechiae on his legs and feet, why the jaundice? Why these new markers in his blood, if it wasn't related to his MS? She told me he should stop drinking (he had never started) and see his GP regarding the "rash". That's when I realized we were on our own....and my search began. Zamboni and David are both spouses of MS patients, and I appreciate their unflagging questioning of the current methodology, which has left so many suffering.
As far as history...we now look back over 20 years of depression, sleep issues, fatigue and see that Jeff had MS for a long time before his first flare and diagnosis at the age of 43. So far he's still stable at an EDSS of 1, but who knows what's ahead?
cheer
Last edited by cheerleader on Sun Mar 01, 2009 11:14 am, edited 2 times in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
(SOrry I got in the middle here I was typing this thing 
....good observations you guys! Have I mentioned in this thread I did abx? They helped me a lot but I progressed too so Zamboni I hope has the key to that as Sarah and Cheer suggest)
These stories all are all over the spectrum of the MS natural history and individual ones are not necessarily right on average, but I am struck by how long some go with not much going on, that seems to reflect what the natural history research was showing.
I just found that the paper I started this thread with made me have a different view of what MS natural histoy is; it is far less aggressive than we generally percieve, and certainly less than my neuro implied. I was thinking that if Sandy or Sarah or I had had--just about any treatment you can think of--we'd have looked like real success stories for a really long time after that.
Like if everyone starts getting SCT within months of diagnosis because we know it works best if it is given "very early" and if I then had the same 10 years of still can jog and 3 more years before I finally fell off the cliff, would that be called success? ( and I wonder if any longer term side effects from that treatment might have caused some other issues for me in that time frame?)
What does even 5 years of great function mean if the timeline is as it appears in the natrual history paper and it is the norm to have years of good function? And how many studies have 5 years of data to even talk about let alone 10?
I found a free version of a REVIEW of many natural history papers, and it is
FOUND HERE
This review of a huge number of other studies indicates that few of the prognostic indicators usually used to determine "good" or bad course are actually helpful
No matter how terrified she was of her future, no matter how desperate she felt to "cure" her MS (as we all do), it was unlikely that this drug could have improved over her already expected mild course. She was not given good information about what her real prognosis is.
I guess that's the real bottom line for me, what does the natural history of MS mean to the larger body of MS literature and the methods used in today's research community, and are they respecting that and using it to make good decisions as to who to include in studies. And, once they do these studies are they respecting the natural course of MS when they draw their conclusions about how useful these drugs were in changing the course of the study participant's MS.
....good observations you guys! Have I mentioned in this thread I did abx? They helped me a lot but I progressed too so Zamboni I hope has the key to that as Sarah and Cheer suggest)These stories all are all over the spectrum of the MS natural history and individual ones are not necessarily right on average, but I am struck by how long some go with not much going on, that seems to reflect what the natural history research was showing.
I just found that the paper I started this thread with made me have a different view of what MS natural histoy is; it is far less aggressive than we generally percieve, and certainly less than my neuro implied. I was thinking that if Sandy or Sarah or I had had--just about any treatment you can think of--we'd have looked like real success stories for a really long time after that.
Like if everyone starts getting SCT within months of diagnosis because we know it works best if it is given "very early" and if I then had the same 10 years of still can jog and 3 more years before I finally fell off the cliff, would that be called success? ( and I wonder if any longer term side effects from that treatment might have caused some other issues for me in that time frame?)
What does even 5 years of great function mean if the timeline is as it appears in the natrual history paper and it is the norm to have years of good function? And how many studies have 5 years of data to even talk about let alone 10?
I found a free version of a REVIEW of many natural history papers, and it is
FOUND HERE
This review of a huge number of other studies indicates that few of the prognostic indicators usually used to determine "good" or bad course are actually helpful
So they go on to say thatThis systematic review found that the strongest and most consistent predictors of long-term physical disability in patients with relapsing-onset MS are sphincter symptoms at onset and early disease course outcomes. Bladder or bowel symptoms at onset, incomplete recovery from the first attack, a short interval between the first and second attack, and early accumulation of disability should alert clinicians to a potentially worse disease course.
Many MS experts believe that female sex, younger age at onset, optic neuritis, and sensory symptoms at onset indicate a more favorable prognosis in patients with RRMS, whereas motor or cerebellar symptoms at onset predict a more severe course.33-34
In this methodologically rigorous and systematic review, we show that many of these factors have no consistent influence (eg, optic neuritis), weak effects (eg, sex, age at onset, and cerebellar involvement), or no effect (eg, sensory symptoms) on prognosis. A critical review of the existing literature does not support using these factors to guide treatment decisions or predict prognosis for patients with RRMS
Notice that first bold "would have been unlikely to benefit from therapy" What they are saying is that her course was expected, based on these natural MS studies to be mild and no improvement over her EXPECTED mild course could have been obtained.Many clinical trials in RRMS routinely enroll patients with a normal neurological examination result, regardless of disease duration and the test drug safety profile. The enrollment criteria for these trials make no attempt to target patients at high risk of developing disability. While this may be acceptable for safe drugs, it seems unreasonable for drugs with serious or unknown toxicities. One woman who received natalizumab during one such recent trial2 died of progressive multifocal leukoencephalopathy. According to the findings of this systematic review, she had no significant risk factors for developing long-term disability, and would have been unlikely to benefit from therapy. Until other reliable indicators of prognosis are identified, we recommend that enrollment in clinical trials of drugs with unknown safety or efficacy profiles be restricted to patients with early accumulation of disability, incomplete recovery from a first attack, and/or bowel or bladder symptoms at onset.
No matter how terrified she was of her future, no matter how desperate she felt to "cure" her MS (as we all do), it was unlikely that this drug could have improved over her already expected mild course. She was not given good information about what her real prognosis is.
I guess that's the real bottom line for me, what does the natural history of MS mean to the larger body of MS literature and the methods used in today's research community, and are they respecting that and using it to make good decisions as to who to include in studies. And, once they do these studies are they respecting the natural course of MS when they draw their conclusions about how useful these drugs were in changing the course of the study participant's MS.
-
lyndacarol
- Family Elder
- Posts: 3394
- Joined: Thu Dec 22, 2005 3:00 pm
- Contact:
Sphincters =smooth muscles
Marie -- just one comment from me: Remember that insulin stiffens and thickens smooth muscles AND the sphincter muscles are smooth muscles
as you read the following quote from the review you cited: "This systematic review found that the strongest and most consistent predictors of long-term physical disability in patients with relapsing-onset MS are sphincter symptoms at onset and early disease course outcomes."
as you read the following quote from the review you cited: "This systematic review found that the strongest and most consistent predictors of long-term physical disability in patients with relapsing-onset MS are sphincter symptoms at onset and early disease course outcomes."
PK if you have those symptoms, sphincter etc, you are more likely to have a rapid course. It is not saying you have no worries or that you should not get treatment. Did you read the paper?
You are actually an example for exactly what they are talking about 15 years of disease and you remain a EDSS 1 right???
You are doing much better than other people with that many years of MS, that's what they meant, if you have those kind of symptoms at diagnosis early on, you are likely to have the course of MS that you have had, comparatively pretty mild.
I would kill to be an edss 1...(well probably not, but I could bore people to death
) Many of us don't dare hope for that even with treatment.
I am NOT saying that you don't have MS or that it is not "bad" it still is a bad disease, but according to a review of a lot of literature on the subject, sensory signs rather than sphincter involvement early on is a better prognosis.....prognosis meaning "prediction for the future with this disease based on studies of others who had it"
LC, I see what you mean!
You are actually an example for exactly what they are talking about 15 years of disease and you remain a EDSS 1 right???
You are doing much better than other people with that many years of MS, that's what they meant, if you have those kind of symptoms at diagnosis early on, you are likely to have the course of MS that you have had, comparatively pretty mild.I would kill to be an edss 1...(well probably not, but I could bore people to death
) Many of us don't dare hope for that even with treatment.I am NOT saying that you don't have MS or that it is not "bad" it still is a bad disease, but according to a review of a lot of literature on the subject, sensory signs rather than sphincter involvement early on is a better prognosis.....prognosis meaning "prediction for the future with this disease based on studies of others who had it"
LC, I see what you mean!
-
Loobie
- Family Elder
- Posts: 2198
- Joined: Mon Sep 11, 2006 2:00 pm
- Location: Dayton, Ohio USA
- Contact:
That sphincter line floored me. Both my urethral and rectal sphincters are both shot and have been my constant shitty companions through all of my MS. Lucky me! Having a screwed up urethral sphincter is just simply no fun. It's almost like it fights me. I start a good stream, and it just snaps shut. I poke and tap my abdomen a bit, another stream starts, then boom, shut. What's even worse is that the only guaranteed way I can positively make it snap shut is to 'push' like I did when I wasn't screwed up to get the last bit out. That's when it really slams shut. So frustrating. Long live IC.
ANd you were diagnosed in '01 so about 8 years and now an edss of about 4-5 or so? That's kind of fast.
I guess if they paid attention to this kind of material they'd have a reason at diagnosis to say Lew we got to err on the side of a little more side effect and toxicity for you since you started out as a sphincter affected person and PK would be told she could wait and see if she likes.
It would inform decisions with a little more predictive value.
The same two patient types would be told" Yes go for the trial you have a more aggressive type at presentation" and the other told "this is not in your best interest since it is so toxic, you can wait until it comes out and we know more, because you'' most likely be fine for some years" Mind you, I'm talking at dignosis not years down the road.
It'd be good if people had that data at diagnosis. I think mostof us are told that we have to get on something and that it is imperative we do it right away, and furthermore even if you have AMS no one starts with big guns, they all start with CRAB and move on if they have to.
could be alittle more targeted maybe
I guess if they paid attention to this kind of material they'd have a reason at diagnosis to say Lew we got to err on the side of a little more side effect and toxicity for you since you started out as a sphincter affected person and PK would be told she could wait and see if she likes.
It would inform decisions with a little more predictive value.
The same two patient types would be told" Yes go for the trial you have a more aggressive type at presentation" and the other told "this is not in your best interest since it is so toxic, you can wait until it comes out and we know more, because you'' most likely be fine for some years" Mind you, I'm talking at dignosis not years down the road.
It'd be good if people had that data at diagnosis. I think mostof us are told that we have to get on something and that it is imperative we do it right away, and furthermore even if you have AMS no one starts with big guns, they all start with CRAB and move on if they have to.
could be alittle more targeted maybe