This Is MS Multiple Sclerosis Community: Knowledge & Support

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

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

Hi Cure,
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.

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.

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.

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 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.

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.

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.



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

Hi Cure,
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'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.

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.

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

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!!!

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

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!

Look lady, dont go start the name callin.

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





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.

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

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/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=1619410


http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=1866009


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.


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

My quandry is that I am the same!

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