IG had no stenosis. That is HER reality. Both are obviously real today but I am very sad for IG. I wanted to share this with her.
MS has been a catch-all disease --I think this is proven by some people waiting five or six years for a dx.The million dollar question is: do we have the same disease? I suggest probably not.
How were you tested?LR1234 wrote:I also have no stenosis found and I have CDMS. I am due to have the dopplers but I am assuming like IG nothing will be found.
One of the items that concerned me, was with one of the guys who had the stents placed by Dr Dake, one of the abnormalities were only identified during the operation, when he had a "poke about". ie the MRV, which is currently considered our "gold standard" on finding stenosis, did not find this stenosis; its fallible.
I found where she said neuro found 6 new lesions.
All of her pain seems unusual for MS.
Marie you bring up some valid points and although IG does not have venous problems we knew that somewhere in the mix there would be the odd results
I wanted to cry. I couldn't believe it. We both felt sure we had it in her case it was going to be there.My heart goes out to IG --- I think all of us who have been to Stanford thought about the reality of no stenosis -- what do we do then
PPS - the "shared aspects" of IG and the other no-stenosis patient wasn't lumbar puncture followed by steroid treatment by any chance, was it?)
I don't think Dr D would miss that kind of thing, I undertood that he really looked. I mean he took a healthy person and did a venogram to look around for a venous issue, he really wanted to find and expected to find one. Also he noted the odd sinus in Mel so he looks high too.cerebral thromobisis....but the blockages are higher up, inside the skull.
The pathology makes this impossible; if you have a stenosis it probably causes the MS lesion, buying the model here, because the stenosis is downstream of the brain. stenosis can cause a lesion upstream (behind) itself but it can't cause one downstream, so MS can't cause a lesion in a vein in the neck or chest. I know for sure that there are known cases 3 in Dr simka's research and I know of another case outside of published literature that a person had no MS diagnosis yet-in other words probable MS with symptoms .... and stenosis. Which fits the model that the stenosis causes the lesions.So it may seem that CCSVI is not the cause of MS but something that comes about when MS is progressing. Is IG like me in terms of being a mild case
Dr D is not a neurologist and is not testing all the differential diagnoses as far as I know. He just has to take you at your neurologists word that you have CDMS and go from there.I am sure this has been explored but did Dr Dake test IG's blood for antiphopholipid antibodies and the clotting times etc
That is the thing; MS is a diagnosis of last resort if you don't know what it is and it looks like MS then you call it MS. But in the '90's Hughes was described for the first time and suddenly 3% of MSers were out of the woods and into Hughes--the clotting issuesince they thought I had Devic's for so long. I guess we'll see what we'll see
yes I agree with thatfairly mild in his symptoms, yet had major jugular problems, so I don't think the stenosis is caused by the MS
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