Forgive me for not tending this thread my computer died so Ihave to use my husband's......ugh!
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I found where she said neuro found 6 new lesions.
All of her pain seems unusual for MS.
Her MS is "mild"--though I hate to used that word. She has had symptoms since an EBV attack-her second or even third one--25 years ago. She always had this odd stuff after that but was not diagnosed with MS until maybe 10 years ago. She can still walk 3 miles or so and is stopped more by pain than weakness.
She had at one time not long ago all of her intial lesions go away completely a totally free MRI--then recently an MRI revealed these 6 lesions had appeared though she was still the same level of functionality. The neuro said forget copaxone go on Rebif...which made her extrememly ill and for the first time since she has had this MS diagnosis she feels like she is really slipping. She feels heavy and her head feels full and stuffy.
When she learned of my trip to Stanford--I had to share this with my good college friend who also had MS (I was dx'd first) and she wanted to go to of course. So that is more history, she is incommunicado but when she sees this later hopefully she will corrent anything she feels is not quite right.
I THINK maybe she has all brain lesions and that terrible neck pain is all discs--I believe she has several out. Hopefully she will affirm this for people later. She was going to get more assessment of that DR D didn't want to send her home with nothing. She liked him a lot
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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
Absolutely. TIMS has these folks on here every once in a while with the slightly different pattern but it is still dx'd MS, but this new work is shedding new light on an an aspect that has been inadequately investigated in the past. IT MAY BE that this will end up some few years from now as a differential diagnosis--ie like do you have CCSVI or MS?
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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
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.
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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?)
no I don't think so but I don't want to "out" any research findings he may be working on there.
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cerebral thromobisis....but the blockages are higher up, inside the skull.
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.
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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
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.
I suspect with time it will probably turn out that if you have stenosis, then that is what caused YOUR lesions. Perhaps not what causes all "MS" lesions in all people. MS may be several diseases, it looks like the bulk of us may possibly be the CCSVI type.
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I am sure this has been explored but did Dr Dake test IG's blood for antiphopholipid antibodies and the clotting times etc
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.
That having been said he has made little effort to screen people and deny people with different presentations a chance at treatment in his study---I suspect someone like Zamboni has some way of making sure he is only testing people who fit certain parameters. We see this all the time in drug testing "Must have MS for less than 5 years, must have less than 3 lesions, one active relapse in the last year....etc"
I do not know if IG has had all of those kinds of differential tests over the years. I have wondered if she has tested for gluten ataxia because her mom, daughters, and grandchild all have celiac. That is a genetic intolerance to gluten.....but there is a variety of it called gluten ataxia that attacks the brian instead of the intestines. She may do some new testing now I do not know. She'll tell us if she does that and finds antyhing
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since they thought I had Devic's for so long. I guess we'll see what we'll see
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 issue
Gluten ataxia was described in the late 90's as well It is "new" in medical terms and not well known. Do I have any right telling someone else to get more differential testing here ? No I don't have a leg to stand on this is too new and too undefined yet to say 'if you don't have this then it is not MS' that would be absurd at this point, but that day may come in the future after the research is done and we know the extent of this diagnois.
Having been a person with the blockage I believe people without it are at least different than I am. but that is just MHO
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fairly mild in his symptoms, yet had major jugular problems, so I don't think the stenosis is caused by the MS
yes I agree with that
thank you and IG can use all our prayers and good wishes. She took one for the team and we all benefit by her steppin up to be a pioneer in this rather than waiting to see what came out in the future. I am devastated myself, I hated it that we both had MS, but I do not liek that I seem to have maybe won this battle and she is not going with me...
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