Not 100%

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Not 100%

Postby mrhodes40 » Thu Jul 09, 2009 5:46 pm

I talked to Island Girl last night she did not have any answers yet and more testing today.

She did NOT have an operable stenosis.

She literally took one for the team guys. She had her MRI MRV and then dopplers. All appeared normal, but Dr D wanted to look with venogram and make sure so she agreed to do that just to make sure nothing was in there beyond the MRV.

There was an unusual thing at the site of the vena cava and subclavian but not enough to repair, and supposedly not enough to cause venous insufficiency.

Apparently, according to IG's comment, Dr D has seen one other person like this, I am not sure how many total patients with stenosis to compare to his 2 no stenosis patients.... He did think he noticed some peculiar similarities in the two non stenosed people, but I don't know exactly what that was and how he felt that played in, but he is obviously looking at that aspect according to IG. (He was slapping the table shouting I KNEW it about aspects of their history)....

IG is undergoing some other tests today to try to find out why she has such terrible neck pain. She had an MRI of the neck scheduled-no results yet.

She wanted me to tell everyone she does not regret this at all because she knows now this is not an avenue for her to be concerned about and pursue. Her MS is not caused by CCSVI apparently, even if many others might have that pathology. She did ask Dr Dake "DO I have MS then?" He said "yes". Obviously he has no way to say or offer anything else at this point, we do not have the full understanding of what the full scope of this is.

There could come a day when if you don't have stenosis you will be immediately referred for further testing for something else, but that is way in the future, Obviously right now MS is exactly what it always has been, this is a new idea being explored, not set in stone.

However, I'd say that it would be interesting if such study persons with no stenosis should be given high tesla MRI's. Where are their lesions? are they actually on the veins as is seen in MS studies or do these people have lesions in slightly different locations?

This is why.......

One of the reasons this model makes so much sense is that the MS patient has perivenular lesions, in other words lesions ONLY on veins. Autopsies of MS patients and research shows this. Furthermore the lesions tend to by symmetrical (just like the pairs of veins are) AND the lesions tend to be right in the periventricular region where the highest blood flow is. That is naturally the area that would be impacted the most by venous back up. All of these thing point to a venous involvement.

Do these people who do not have stenosis have a subtly different kind of lesion perhaps? Are they in particular having lesions in the parenchyma and or along arteries as well as veins? A high tesla MRI could determine this.

In the leg ulcer about 30-40% of ulcers according to one paper I read were directly attributable to venous stenosis, the other lesions were caused by many other kinds of issues and even apparently 10% are primarily inflammatory in nature with that last group being very hard to identify and treat. Zamboni's numbers sure don't seem to be pointing to that outcome with his very high reflux numbers and concordance, but we will know more about that as time goes on and more is released.

MS is a diagnosis of last resort, so it may be that people who are not typical---lyme perhaps? gluten ataxia?--- end up with that MS diagnosis and our current technology just does not differentiate but it may with more study and effort to tease out these differences.

This research is a great step in the right direction, to finally fully investigate the involvement of the venous system in MS lesions.

I do not pretend to know where this will go, what I do know is that I personally have two severe stenoses with a lot of collateral circulation that disappeared as soon as the stenoses were relieved. That was MY reality.

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. :( :cry:

The million dollar question is: do we have the same disease? I suggest probably not.
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Postby IHateMS » Thu Jul 09, 2009 6:34 pm

IG's lesions... where are they located? Brain, c-spine, thoracic, etc.? How many lesions does she have? I found where she said neuro found 6 new lesions.

All of her pain seems unusual for MS.

My neuro has told me for the last ten years that he believes ultimately, MS will be determined to be multiple diseases. In the last ten years there has been a test somewhat refined for Devic's, which was often called spinal cord MS.
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Postby peekaboo » Thu Jul 09, 2009 6:36 pm

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.

MS and other so called autoimmune deseases have much in common so I would doubt that IG may not have MS. Yes I am disappointed for IG's sake and now does she want to get other dx or further investigate her symptoms that may be another dx. I wish and pray for her as the collective TIMS will as well.
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Postby Sharon » Thu Jul 09, 2009 6:59 pm

Marie you wrote
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.


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? Thank goodness Dake is continuing his testing of IG - we know that he will not miss anything. Let's hope that he finds the cause of the neck pain.

The million dollar question is: do we have the same disease? I suggest probably not.
MS has been a catch-all disease --I think this is proven by some people waiting five or six years for a dx.

My prayers are sent to IG.

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Postby peekaboo » Thu Jul 09, 2009 7:03 pm

P.S. My 2 cents again...there will always be anomolies....keeps us on our toes...
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Postby skydog » Thu Jul 09, 2009 8:07 pm

Our Hearts goes out to you IG, Dr. Dake is thorough he will keep searching for the answer. Keep the faith, We all are here for You !!! Peace, Mark
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Postby zap » Fri Jul 10, 2009 12:02 am

I am probably talking out of my ass here, but ...

I wonder about MRV scans looking for stenoses higher up - in the medullary and cortical veins?

I've read some stuff about 'cerebral venous thrombosis' or ''cerebral venous sinus thrombosis' that sounds at least superficially similar to IG's symptoms of headache and neck pain - that, or 'idiopathic intracranial hypertension.' Both are similar to 'standard CCSVI'; venous blockage, slowed perfusion times, etc - but the blockages are higher up, inside the skull.

I dunno, of course the notion came to me as a way to 'salvage the CCSVI model,' (yes, I know IG's lack of expected stenoses does not disprove it, but hey), but perhaps its not rubbish ... OK, it probably is but I can't see why at 2 AM.

(PS - I can't recall who had the 'weird' MRV scan done, with all the brain veins highlighted instead of the jugulars, but they may have been accidentally scanning for CVST? (See http://radiographics.rsnajnls.org/cgi/c ... uppl_1/S19)

(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?)
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Postby LR1234 » Fri Jul 10, 2009 2:22 am

......
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Postby LR1234 » Fri Jul 10, 2009 2:58 am

......
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Postby Loobie » Fri Jul 10, 2009 4:55 am

This makes me wonder as well since they thought I had Devic's for so long. I guess we'll see what we'll see. We're definitely guinea pigs. This is another layer of the onion peeled back. Let's just keep peeling.
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Postby Arcee » Fri Jul 10, 2009 5:32 am

It is a puzzle, but at least there are some really smart people looking at it all with a fresh perspective.
Marie, please pass on to IG the respect and caring we have for her. She really is taking one for the team, and I hope that she ends up with a direct benefit too.
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Postby whyRwehere » Fri Jul 10, 2009 5:37 am

I think Jeff was fairly mild in his symptoms, yet had major jugular problems, so I don't think the stenosis is caused by the MS (that is my guess), but I agree with you about the thick/ sticky blood....that has been the cause of Hughes Syndrome. I would like to know about where IG's lesions are as well. Sorry for her. :(
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Postby CureOrBust » Fri Jul 10, 2009 6:46 am

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.
How were you tested?

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. "Luckily" the patient had another issue, which DID show up on their MRV, and hence Dr Dake performed the procedure; providing an opportunity to find the other stenosis. What if someone's abnormalities were all just like this persons "hidden" issue?
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Postby Sharon » Fri Jul 10, 2009 6:55 am

Cure you wrote

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.


Just curious - is this a patient who does not post on TIMS?

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Postby mrhodes40 » Fri Jul 10, 2009 6:55 am

Forgive me for not tending this thread my computer died so Ihave to use my husband's......ugh!

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

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?
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.
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.
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.
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.

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
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
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... :cry:
Last edited by mrhodes40 on Fri Jul 10, 2009 7:09 pm, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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