This Is MS Multiple Sclerosis Knowledge & Support Community

robbie,

My experience with SPMS is that relapses occur when another illness, such as colds, flu, sore throat, etc. occur. All my symptoms get much worse during this time, but gradually ease up when the other illness goes away.

There is a transition period between RRMS and SPMS, during which time relapses happen even though getting back to baseline does not occur anymore. In other words, some symptoms do not go away unlike the RRMS days.

I have been SPMS for more than 20 years and have been going slowly downhill during this time without relapses.

Now I can tell a difference in how my quality of life has deteriorated by looking back over a few years and remembering what I was able to do then and now.

Keep hanging on robbie, I still owe you a beer when this mess is over. We may even go to London and have a beer in one of bromley's pubs.

gwa

Hi Chris, I didn't do a very good job of separating the comments to two different people in the same post so actually those mean spirited things I said were actually directed at CureOrBust.

BUT..........so that you don't feel neglected I did give you one of my best slams last night. I was laughing my butt off when I wrote it and I was convinced that you would have a nasty reply for me today, but the day has gone by and nothing.

It's the post "Antibodies to Myelin" but please don't ask me to explain it because having to explain a joke removes the fun!

Bob

Robbie--let me clarify a little. Betty has never taken conventional meds--she does not support them. She has always used diet, exercise, meditation, etc. She has had no relapses OR disability in 20 years.

Let me approach this from the back end. "Benign" MS. Uhhhhh, exactly what in the hell is "benign" MS? Of all the theories to come out on MS, I find this one possibly the most absurd! It makes absolutely NO SENSE to me at all--just me.

Again, I totally support traditional medicine. However, in my research journey into MS, what I quickly learned was that I could find far more information on what they did NOT know as compared to what they DID know.

For me, this is so frustrating!

so is it possible that she dosen't have ms at all?

Robbie--could be. Just like the first Tysabri death victim. That poor 40+ year old woman whose brain disintegrated in about 6 weeks! And she never had MS.

Robbie--STOPPPPP! LOL

Robbie--STOPPPPP!

Sorry Chris....I don't find humor in your frustration.....snicker, snicker!!

Hi Cure,

I dont necessarily think its the first. Its possible that MS is really a condition where our bodies undergo something that causes the BBB to become degraded. eg by infection, genetics or both etc etc etc. It may be this trigger as the "first" event. Any neuro that prescribes steroids for a relapse to me is saying that closinbg the BBB will stop MS in its tracks (for a while).

I think you took me to infer that the permiable bbb is the first step of the MS process but I took great pains to point out that it is the first "recognized" step of the MS process. In other words, we agree on that one. My point is that it seems logical that "sealing" the permiable bbb would stop everything after...effectively ending what we consider to be MS but wouldn't do anything about the underlying autoimmune process....tendency towards other additional autoimmune diseases, symptoms MS sufferers share with other autoimmune disease sufferers, symptoms of other autoimmune diseases not normally associated with MS AND the continued attempt of whatever it is that causes the increased permiability of the bbb in the first place.

I have NEVER herd anyone say that someone can have MS but a healthy BBB. So it would appear to be the only un-argued "truth". I'm stating it this way so someone will prove me wrong Smile

Now I'm not sure how you came to the conclusion that I inferred that someone with MS could have a healthy bbb because that's not what I believe.

Now, a lot of current treatments do work on most of these MS disease paths. Steroids SHUTS the BBB and is known to STOP MS in its tracks (at least in the begining). Now, what else has been shown to provide this effect? What else do they give you during a relapse (ie when MS is at its most active)? How does this other agent work?

First, my statement was "controlling any of these would result in improvements from the treatments we now have but anything resembling a real "cure" is going to have to come from knowledge of even earlier stages of the disease process which we have yet to identify." which wasn't a statement that we can control any or all of the factors of MS we are aware of but "if" we could control them. In regards to your response, from what I've read researchers can't state with confidence what any of the MS drugs do exactly....including steroids.

Helminths have never been shown to stop a relapse in it tracks. Wink

Now that's just mean and I think you've hurt their little feelings! Seriously....I think the researchers know whether or not your statement is true but I don't.

"I can't imagine anyone ever being able to come up with an incident leading to immune dysfunction which could be prior to the relationship between the human immune system and the parasites which have been with us and regulating our immune systems throughout our evolution."

Hey, get your own thread! this one is about it NOT being an immune system dysfunction but a BBB dysfunction. Close the BBB and no pig worms would be needed. I implied these parasites may have been covering the effects of an overly permeable BBB, this doesnt meen we shouldnt be looking for a way to remove the need for the critters.

HEY NOW!! Share and play nice! OK, since it's your thread I'll play by your rules. I'll bet you're right, MS isn't an immune dysfunction and is in reality a bbb dysfunction. And the multitude of seeming similarities to what really are autoimmune diseases is nothing more than a quirk of fate of consistant though astronomical proportions. Stranger things have happened...... on second thought that really would be the strangest thing ever.

The following is from the first link in my original post. It implies its simply a size issue, however, I have seen various tovaxin animations which imply its more than size which determines what gets through and what doesnt.

I've been told on multiple occasions that size doesn't matter. Admittedly the accompanying snickers didn't do much for my ego.

Bob

Lyon, your calling me a girl (not that there is anything wrong with being a girl), but as I caught up on this thread, I found post after post where you "argued" about us not "arguing"? huh?

I am taking the extreme stance here, that MS is not an Autoimmune dysfunction AT ALL! Remember my point that everyone produces MRTC's. Now, we may be attenuated by the inflamation caused by the BBB disruption, but thats a flow on effect of BBB disruption.

I've read researchers can't state with confidence what any of the MS drugs do exactly....including steroids.

But what I am saying is that for people steroids work for, its the BBB effects that cause a big part of the benefit. I have yet to read any research that has found otherwise. If we cant disprove it, it becomes the best we know.

As for what gets through the BBB, virus and bacteria can definitely get through, even a heallthy one. And I see (in my little thread of absolutes) that they could actually attack the BBB to cause the permeability.

As a side, I have just read somewhere that cladribine affects the BBB permeability also.

Now, my problem is that I can see the merits to this argument, but I dont think I believe it. However, whenever I try to prove it wrong to myself, I turn up empty handed and left with nothing but to believe in it. It cant be this simple, and not be solved.

Please, prove me wrong so I will understand it all better.

while searching on cladribine, i came accross this statement in regards to "Antegren"; which if I am not mistaken is Tysabri.

http://www.msaa.com/publications/Spring04/research_news.htm wrote:Passing through the BBB is the necessary step for the cells to attack the myelin and cause damage to the nerves of the central nervous system (CNS). To cross the BBB, immune system cells must first adhere to the blood vessels.

And on cladribine:

Cladribine inhibits immune reactions by disrupting the production of certain white blood cells, particularly lymphocytes, which are involved in the disease process of multiple sclerosis.

Which to me says that they are thinking the immune modulation is its biggest effect (ie not its BBB effects).

Hi Cure,

CureOrBust wrote:Lyon, your calling me a girl (not that there is anything wrong with being a girl), but as I caught up on this thread, I found post after post where you "argued" about us not "arguing"? huh?

I only aim to please. Your wish is my command. What would you rather I call you, "gal", "ol' gal", "madam" or "girl"? I've already been warned not to call you "late for dinner"!

I am taking the extreme stance here, that MS is not an Autoimmune dysfunction AT ALL! Remember my point that everyone produces MRTC's. Now, we may be attenuated by the inflamation caused by the BBB disruption, but thats a flow on effect of BBB disruption.

I'd surely like to harrass you about this one too, but I'm not convinced enough to argue it either way. As I've said before, I'm really not sure anymore how much it matters whether MS is autoimmune or not.

But what I am saying is that for people steroids work for, its the BBB effects that cause a big part of the benefit. I have yet to read any research that has found otherwise. If we cant disprove it, it becomes the best we know.

You are the hardest person to argue with! Not that you've got a good point but because I sometimes think you come up with these things out of the clear blue sky I've read speculation that steroids might have some effect on the bbb but far and away steroids are known for controlling inflammation.

As for what gets through the BBB, virus and bacteria can definitely get through, even a heallthy one. And I see (in my little thread of absolutes) that they could actually attack the BBB to cause the permeability.

I hate NOT to be able to differ with you about something but I THINK I agree

Now, my problem is that I can see the merits to this argument, but I dont think I believe it. However, whenever I try to prove it wrong to myself, I turn up empty handed and left with nothing but to believe in it. It cant be this simple, and not be solved. Please, prove me wrong so I will understand it all better.

Please clarify what you are talking about? Proving you wrong regarding your original post which started this thread?

Bob

Lyon--my "STOPPPP" was meant as a joke! I have a VERY strong sense of humor!

Now to test that sense of humor, I'm going to go read your "SLAM"--can't wait!!!

Chris55 wrote:Lyon--my "STOPPPP" was meant as a joke! I have a VERY strong sense of humor!

I was pretty sure of that but you've got to admit that robbie was questioning you pretty hard.

Now to test that sense of humor, I'm going to go read your "SLAM"--can't wait!!!

You're gonna love it. It's terrible! I was going to add a smiley face or a (just kidding Chris!) but that would have watered down the intensity of the irreverant humor.
Bob

I don't know Chris, it's been a really long time......I think I'm going to have to explain it to you

No problem Bob--I found it--I read it--I responded.

Robbie wasn't giving me a hard time at all. We all have our opinions and mine are just as strong as everyone else's--in case you haven't noticed!

Lyon wrote:What would you rather I call you, "gal", "ol' gal", "madam" or "girl"? I've already been warned not to call you "late for dinner"!

Look lady, dont go start the name callin.

Lyon wrote:I'd surely like to harrass you about this one too, but I'm not convinced enough to argue it either way.

If you agree there is nothing to harrass me about, however, the point I have made in regard to this ocmment, I think is generally accepted ie All people produce MRTC's

But what I am saying is that for people steroids work for, its the BBB effects that cause a big part of the benefit. I have yet to read any research that has found otherwise. If we cant disprove it, it becomes the best we know.

Lyon wrote:You are the hardest person to argue with!

No its actually very simple, provide me research (however more than one!) proving otherwise, and I will take it on. The problem is all I can find supports this proposition.

Lyon wrote:Not that you've got a good point but because I sometimes think you come up with these things out of the clear blue sky

Where I get these ideas, the sun dont shine, but that doesnt make my propositions any weaker.

Lyon wrote:I've read speculation that steroids might have some effect on the bbb but far and away steroids are known for controlling inflammation.

Usually, for OTHER conditions, steroids are specifically used for immune modulation and/or inflamation reduction. However, for MS (see previous links) it appears to me that the common accepted path of action is the effects on the BBB.

http://www.ncbi.nlm.nih.gov/entrez/quer ... ds=1619410

...During treatment there was a rapid reduction of BBB abnormalities...

http://www.ncbi.nlm.nih.gov/entrez/quer ... ds=1866009

Thus, the blood-brain-barrier integrity improved after high-dose IV methylprednisolone, which correlated well with the clinical improvement.

Read the whole abstracts peronally, as it alm,ost feels as if I am almost taking it out of context; but it appears they are making assumptions in the abstract. But I am guessing the ideas are better explained in the full text.

Lyon wrote:I hate NOT to be able to differ with you about something but I THINK I agree

Its starting to worry me that you become so emotional that you agree with a point I happen to agree on, when it really is a world renown, un-arguable fact. But you cry because I also believe it

Lyon wrote:Now, my problem is that I can see the merits to this argument, but I dont think I believe it.

My quandry is that I am the same!

Lyon wrote:Please clarify what you are talking about? Proving you wrong regarding your original post which started this thread?

Yes, I cant think of anything in this thread that has invalidated anything I originally posted.

Hi Cure,
Help me out here (SIMPLIFY!) because I'm trying to understand what you were trying to point out in your original post.

1. That MS isn't autoimmune?
2. That there is an unknown factor at work? ("Anti-Brain factor 2" )
3. That MS is a disease of the bbb?

Something else I wondering and you didn't make clear....you feel that the permiable bbb really is the first step in the MS process and NOT just the first step which researchers have identified at this point?

Bob