I posted this in General, but am saying it here too...

[shye]

Thanks Marc for your usual clarity.

I am starting chelation (started today) disodiumEDTA, knowing that I have some calcium buildup in carotid (shows on x-ray, but not yet with sounds via stethescope), and figure probably have more plaques elsewhere in arteries and veins--will be posting results periodically in chelation thread--
Am hoping this might mitigate any vasculitis, esentially dilate arteries and veins, and help normalize blood flow, if that is indeed my problem.
Am doing lots re diet, supplements, and Inclined Bed Therapy (which helps my circulation greatly--now have pink feet versus pale white for years, and feet with FEELING)--but every little thing helps I find.

Much luck in your search--keep us informed--we truly do learn from your experience, as you say, we all seem to have slightly different angles to similar problems, and who cares in the end what we call it, just so we can identify it to heal it.

[whyRwehere]

Hi Marc,
Of course, I thought of you when I heard this. But isn't it interesting that you were termed a progressive MS person, but now it suits to say you aren't that after all.
My husband may well be more than just a ccsvi sufferer...very likely he needs more fixed than can be. At least we are looking now for the problem, though, huh? Had all your veins been checked, or just the jugular and azygous veins?
Again, if they look to see that it is a venous illness, they wouldn't be giving you drugs for MS that make you feel worse, or indeed make you worse.
I am waiting to hear what the NHI is going to do for you now....

[marcstck]

Hi Marc,
Of course, I thought of you when I heard this. But isn't it interesting that you were termed a progressive MS person, but now it suits to say you aren't that after all.
My husband may well be more than just a ccsvi sufferer...very likely he needs more fixed than can be. At least we are looking now for the problem, though, huh? Had all your veins been checked, or just the jugular and azygous veins?
Again, if they look to see that it is a venous illness, they wouldn't be giving you drugs for MS that make you feel worse, or indeed make you worse.
I am waiting to hear what the NHI is going to do for you now....

Please keep in mind that my MS diagnosis was called into question well before CCSVI was on anybody's radar. As far back as mid 2008, some prominent neurologists were already acknowledging that my case was extremely atypical.

So far, the only veins that have been checked have been my jugulars. I'm hoping that the NIH will decide to do a full venogram on me, and I should be hearing from them sometime in the next couple of weeks.

As I said, it's been long acknowledged that there are vascular illnesses that can mimic MS, and any discussion of the differential diagnoses of MS always spends a considerable amount of time exploring these different vascular issues. These differ from CCSVI in that they tend to incur damage on the CNS directly, whereas the CCSVI model combines direct damage with an aberrant immune attack. This is a very important distinction to make, and to understand...

Unfortunately, by the time they finally determined that I probably don't have MS, I've pretty much done all of the MS drugs that are out there. If they figured this out three or four years ago, I could've saved myself from ingesting all kinds of poisons...

[jay123]

and what really sucks Marc is that they did have it figured out in 1935 with the dog experiments!

[Bethr]

what dog experiments? Would like to hear about it. Cheers...

[whyRwehere]

Quoting Marc:

As I said, it's been long acknowledged that there are vascular illnesses that can mimic MS, and any discussion of the differential diagnoses of MS always spends a considerable amount of time exploring these different vascular issues.

I don't remember anyone considering this in my husband's case. Did they consider it in yours? Unfortunately, once you are labled, the other neurologists tend to agree with the first. Of course, I asked if he had been tested for Hughe's and they said, yes, this always happens, but pardon me if I doubt that was the case.
As for ccsvi, it seems to me that my husband's lack of left jugular function, until the angioplasty, shows that lacking flow can affect a person. So, in my opinion, he has that and more. I look forward to seeing your MRV results. I hope they can fix a few things, while they are in there, if there is anything to fix!