I was ready to donate blood, spinal fluid, whatever I could to help the cause
me too. IT is very surprising to me once I was told it was autoimmune that we weren't doing any assays to see what was what.
Thank you. . I'm excited about this! Maybe falsely so (read: Tovaxin), but it's the hope that keeps us going sometimes I believe
It's just my opinion, I'm a patient too, but thanks for the compliment.
but I have to say I am gung ho about this and may be on too soon too. It is not been replicated by anyone else yet, that's a problem.
I do NOT believe that the reason for that is that Zamboni is wrong, the trouble is I don;t think this has caught the imagination of the VASCULAR docs yet. IMHO it will take interest by THEM to see this through because they are the ones who can do the work. All those specialties take several years post med to learn them, a neuro does not know what a vascular guy does.
Where it seems a no brainer to a vascular guy "Hey this is like a venous ulcer" to a neuro it seems likewise a no brainer "waddaya' talkin' about, it's autoimmune".
Whether other people need lots of training to be able to see it is an issue; lets hope not. Cureorbust got his done and they only could see one abnormal reading, but is that because if Z had been there he'd have seen 2 and they just were not as good at seeing it?
What remains to be seen is whether relieving any possible strictures helps at all; it may not....(though logically I can't see how leaving a blockage there and venous congestion is somehow "benign")
What also remains to be seen is whether or not there is some epitope spreading from the lesion area, like this:'
congested vein+ leaking stuff=lesions
lesion +injury=imune activation to repair the area
immune activation and vigorous response = accidental "self reactive" antigens
Epitope spreading is possible in many situations. They know for example in mice with CPn that epitiope spreading and autoimmunity can be a consequence.
The good news about that is that in those kinds of situations ie rheumatic fever, they are self limited just ike EAE is in mice, so that would not mean that people would necessarily need lifetime suppression. These things are all unknown it may be a long time before the whole entire thing is understood and all of the rmaification of this can be even nown much less addressed.
So there are a lot of things still to learn about this at this point it is not a treatment but an idea.
I am at a point where there are no options for me: I have had no inflammation to speak of since I went on copaxone many years ago. I was normal then and I am now very disbled though all that time I remained a poster child for how well cop controls inflammation.
I sent my last MRI to Dr Kerr and he said no inflammation you can't do regvimmune it will not work. My neuro won't prescribe novantrone because all his patients got heart damage with little reward so he won;t prescribe it any more. he offered that tysabri will not work for me cause of the ifnlammation deal, but offered he'd give it to me if I want on the off chance it might do something. Well the side effect profile is tooo grim for "off chances".
I did abx and they helped a lot in terms of energy and clear headed ness, but I progressed. IS that because of veins?
Are we gettting the picture here? I'm not talking about this cause I am dispassionate: I'm talking about it cause I got nothing so yes I am gung ho here too, maybe inappropriately so.
I keep looking for the deal breaking fly in the ointment and I ca't seem to find one.
But it feels really really good to know this has come out now. I have a new life in it. I'm kind of thinking maybe I can get the bioness leg lifter thing and walk a little instead of dragging, and maybe I can only be a person how uses a chair once in a while like at the airport if the Z stuff pans out and we can stop it here. And instead of circling the drain I feel like maybe, just MAYBE, we got a plug
It is too early for people to make treatment decisions based on these new ideas; people should do what they'd do otherwise with their doc's help. We'll all REALLY get this when it is out.
But if you are like me: its almost like a dream to discover suddenly against all expectation that someone in a completely unexpected quarter has came up with something brand new that FITS (hey, I have great inflammation control, how happy do you think I am with new inflammation approaches?) and it looks like its going somewhere.
Thanks everyone for being part of this really rather fun converstion and lets all hope. Dr Zamboni wants prayers, we can all do that too.