Any PWMS would consider JUST having CCSVI and no RX?

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

CCSVI or CCSVI+RX?

Yes, just CCSVI for me.
21
88%
No, I would want both CCSVI and an RX.
3
13%
 
Total votes : 24

Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby CuriousRobot » Fri Sep 16, 2011 5:02 pm

Ha-ha, yes. Maybe I read my name and then being to formulate my thoughts. But that is interesting about your prediction. Were you experiencing optic neuritis? Anyway, imagine if there was a substantial portion of MSers who had that. I'm only speculating, but maybe ~20 in when disease typically begins. I've never heard of the "40" rubicon for SPMS, but thanks for the links and sharing in the discussion.
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby ErikaSlovakia » Sat Sep 17, 2011 12:54 am

Cece wrote:I am approaching 40 in a few years, so it is a matter of some concern. Age 39 - 40 is also when the brain peaks in its amount of myelin, in the healthy population, and after that, gradually declines.

I will be 40 next year. It means I should expect some disaster?
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby Cece » Sat Sep 17, 2011 9:21 am

ErikaSlovakia wrote:
Cece wrote:I am approaching 40 in a few years, so it is a matter of some concern. Age 39 - 40 is also when the brain peaks in its amount of myelin, in the healthy population, and after that, gradually declines.

I will be 40 next year. It means I should expect some disaster?
Erika

Everyone's course is individual, so no, we can never know what to expect in MS.
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby ErikaSlovakia » Sun Sep 18, 2011 12:45 am

Cece wrote:
ErikaSlovakia wrote:
Cece wrote:I am approaching 40 in a few years, so it is a matter of some concern. Age 39 - 40 is also when the brain peaks in its amount of myelin, in the healthy population, and after that, gradually declines.

I will be 40 next year. It means I should expect some disaster?
Erika

Everyone's course is individual, so no, we can never know what to expect in MS.

Thanks, I thaught the same. We never know...
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby coach » Sat Sep 24, 2011 1:09 pm

1 Eye some neuros offer the option of Novantrone for spms. I think it may have cardiotoxity sissues associated with its use. I'm spms and have my struggles but I'm just a little skepital about some of the drug therapies. Had ccsvi treatment and some improvement to start with but never in the motor skills department. Never seemed to have RRMS just a skow progression after CIS of optic neuritis in right eye after first child in 1984. Asymptomatic for 14 years after that. Don't have the cerebellar tonsillar herniation of classical chiari but do seem to have a lot of the symptoms, including clicking sound in my neck It may be CSF flow issues instead causing a functional Chiari as Dr. Flanagan on here referred to it. Never used the DMD's since i did not have RRMS. So it seems I went from . BTW since you seem to be pretty level headed Is ther a Google search that used to be on the TIMS HOME PAGE BEFORE THE UPDATES that I'm just missing somewhere.Trying to ge3t on board with changes but guess I'm missing the boat somewhere.
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby NHE » Sun Sep 25, 2011 2:39 am

coach wrote:BTW since you seem to be pretty level headed Is ther a Google search that used to be on the TIMS HOME PAGE BEFORE THE UPDATES that I'm just missing somewhere.Trying to ge3t on board with changes but guess I'm missing the boat somewhere.


The old ThisIsMS home page is gone now. The software was old, would frequently break, was prone to being hacked, and had been abandoned by the developer back in 2007. You can use Google's advanced search to search ThisIsMS. Enter thisisms.com into the "Search within a site or domain:" field. Alternatively, you can add site:thisisms.com to your search query from the regular Google search page. I hope this helps.

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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby CuriousRobot » Thu Sep 29, 2011 1:33 pm

TTT

The juice is worth the squeeze.
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby frodo » Fri Sep 30, 2011 12:53 pm

CuriousRobot wrote:
1eye wrote:I have been refused DMDs by two neurologists. They say it's because I have SPMS. I voted no.


My question was a hypothetical one. If you were early RRMS, would you only get CCSVI performed?


If I were an early RRMS, and some tests would show a broken valve, a stenosis and some collaterals impairing my brain flow, for sure I would try to fix my vascular problems by any available means. For sure, I would take an angioplasty if I was offered one.
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby 1eye » Fri Sep 30, 2011 5:39 pm

Sorry, I was not reading this thread and did not see that I had been addressed several times.

Regarding "SPMS" I am not the right person to ask, because I do not believe it exists outside of actuarial and turf-defending minds. You will say that is sour grapes, but I believe it is one disease, and that a lot of people have made a lot of money on so-called DMDs, and that there is a difference between individuals because there is a certain randomness in genetics, how they treat their own bodies, and how long they have had a problem. I think severity at any one moment in time, even just of autoimmune symptoms caused by CCSVI, may be able to be temporarily treated with things like interferons and Tysabri. In anybody's long haul, you have to have a healthy circulatory system, arteries, veins, spinal fluid. Drugs for that are OK. If you believe something is working, you might get healthier, too. I call that the Hope Effect. I think LDN may have a better chance because it may promote angiogenesis where it otherwise wouldn't happen. But I am just an ornery crank and nobody in their right mind listens to opinions of deranged "SPMS"ers whose brains are addled by mitoxantrone and too many PASAT tests.

Certainly don't ask me of all people, how you tell if you have converted to "SP". I am not now, and never have been, neuro or any other logical.
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby Donnchadh » Fri Sep 30, 2011 7:32 pm

There is a small subcategory (5%???) of "MS" patients who did not follow the symptom progression you are assuming to happen. My neurological problems started the day I had a severe fall-I was 100% normal the day before. I was 42 years old when the accident happened and entirely symptom free my entire life prior to then. I have corresponded with a couple other "MS" patients who have similar histories of accidents who were normal before but then suffered after their injuries. How soon the neurological problems manifested and how severe the symptoms were directly related to how extensive the injury was.

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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby 1eye » Fri Sep 30, 2011 8:20 pm

Donnchadh wrote:There is a small subcategory (5%???) of "MS" patients who did not follow the symptom progression you are assuming to happen. My neurological problems started the day I had a severe fall-I was 100% normal the day before. I was 42 years old when the accident happened and entirely symptom free my entire life prior to then. I have corresponded with a couple other "MS" patients who have similar histories of accidents who were normal before but then suffered after their injuries. How soon the neurological problems manifested and how severe the symptoms were directly related to how extensive the injury was.

Donnchadh


I don't know if you are addressing me, but I don't think everybody who has the mechanically caused symptoms necessarily comes by them congenitally. I agree the same mechanical difficulty can be encountered by traumatic injury. In that case, as well as some congenital cases, I figure there can be just one never-ending symptom, or "progressing" multiple symptoms with no remission, or multiple symptoms that don't appear to change much at all, depending on your unique individual plumbing, and also on plain luck, and on how long it has been that way. Most of it is congenital abnormalities though, I think. Why they take so long to surface, I don't know. I suspect it is there in some sub-clinical and later minor way, from birth. You grow up and out and then you get older, then just old, then you die, even if all goes well.
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby sou » Sat Oct 01, 2011 10:54 am

I used no drugs, I use no drugs. I am not against their use. They were just ineffective and not worth the money and interference to daily life. So, "CCSVI only", which is a real condition and has a practical circulatory effect, unlike DMDs which have a probable imaginary effect only.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Re: Any PWMS would consider JUST having CCSVI and no RX?

Postby Thekla » Sun Oct 02, 2011 1:44 pm

Fascinated by those atypical cases mentioned above. Although my ms today is very similar to what my grandmother experienced, a possible nod to a congenital influence, my reality is that despite a brief bout of ON following the birth of my 2nd child in 1997, I was asymptomatic until 2003. In the Fall of 2002 and then again in Feb of 2003, I was involved in 2 car 'minor' accidents both head on with whiplash soft tissue type injuries. Following the 2nd accident, I had gradual numbness leading to a mri diagnosis. It has been a steady decline since then. ccsvi treatment has provided improvements but not in motor skills. Dr Sclafani checked everything with ivus so I can't assume that there is a missed big honking stenosis to blame somewhere. I have never been on any dmds except LDN mostly because I did not agree with them. Like Dr Campalani, the cardiologist who was treated by Dr Zamboni said, “I always refused to take any medication whatsoever because I don’t believe you should take drugs to treat something the doctors don’t know the origin of,” He has taken Omega 3s and other antioxidants since treatment though.
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