You're right to ask questions Ewizabeth.
I too am wondering about CCSVI. I'm more of a sit-back and take stock for a while, and then act, kind of person. So at the moment I'm reading about it. I'm pretty certain that CCSVI represents a breakthrough on a major part of the whole puzzle of MS - I do suspect that other factors play a part too (viral/bacterial/vit D status etc).
I am wondering about it though when a guy recently said he'd MS but no stenosis - how did that thread pan out?
Have many other vascular specialists been able to replicate and see the same problem in MS'ers around the world? I'm just a bit concerned there's too much emphasis on fitting the people into the CCSVI model rather than the other way around, at the moment. The same huge enthusiasm preceded the stem cell treatment collapse.
I am very hopeful, but cautious.
CCSVI, why all the hoopla? Is it really that good?
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Wonderfulworld
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ewisabeth,
Hi, I think it's OK to ask this question on the General Discussion. That's how we get differing and sometimes heated opinions. I am still doing my Tysabri and have an infusion on Monday. I am going to talk to my Neuro about LDN and get off of the Ty with all the negatives about it. This will be my 8th infusion and 2nd since the CCSVI Procedure.
Anecdote wrote:
I also had a congenital lung abnormality when I was born and my 29 year old son also has the same abnormality, but his did not show up until his mid-twenties.
Hope this helps.
Cat
Hi, I think it's OK to ask this question on the General Discussion. That's how we get differing and sometimes heated opinions. I am still doing my Tysabri and have an infusion on Monday. I am going to talk to my Neuro about LDN and get off of the Ty with all the negatives about it. This will be my 8th infusion and 2nd since the CCSVI Procedure.
Anecdote wrote:
I had a blockage high in my right jugular that was definitely congenital. I was a cell that came loose inutero and planted itself in the jugular vein where it stayed and blocked the flow until I had the CCSVI procedure.One more thing, much is being made of these abnormalities being congenital. You can only say for certain that something is congenital if you test for it soon after birth, or in utero. The word congenital is often used when someone sees no apparent cause.
I also had a congenital lung abnormality when I was born and my 29 year old son also has the same abnormality, but his did not show up until his mid-twenties.
Hope this helps.
Cat
Holly - Shine On You Crazy Diamond - Pink Floyd
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
Cat,
What do you feel the CCSVI procedure has done for you? And why are you stopping the Tysabri? Isn't it working for you? Have your MS symptoms reversed since you had the procedure done?
I'm sure I have some buildup of plaque in some of my veins and arteries due to lapse in diet over the years, but I don't know that a stent procedure would cure the MS.
I'm taking fish oil and flax oil and following a heart healthy diet to clean out my arteries some, and it's supposed to help the MS too. But I don't know that having a stent put in (or a balloon procedure is going to cure the MS.) I guess I just don't understand the logic behind all of this.
If it has stopped your MS symptoms and your neuro feels your MS is cured to the point of not needing any meds anymore, then that's great.
I hope I'm not being too forward in my questioning.
What do you feel the CCSVI procedure has done for you? And why are you stopping the Tysabri? Isn't it working for you? Have your MS symptoms reversed since you had the procedure done?
I'm sure I have some buildup of plaque in some of my veins and arteries due to lapse in diet over the years, but I don't know that a stent procedure would cure the MS.
I'm taking fish oil and flax oil and following a heart healthy diet to clean out my arteries some, and it's supposed to help the MS too. But I don't know that having a stent put in (or a balloon procedure is going to cure the MS.) I guess I just don't understand the logic behind all of this.
If it has stopped your MS symptoms and your neuro feels your MS is cured to the point of not needing any meds anymore, then that's great.
I hope I'm not being too forward in my questioning.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
Could you elaborate on that a little more. For a while, I did follow that thread, but I haven't kept up with it lately. I remember many people were going to Costa Rica for the stem cells, and they were swapping stories, places to stay, etc. Have things not worked out as was hoped?ewizabeth wrote:I ask questions about this on other forums about people going out of the country for stem cell treatments and I really get a lot of negative feedback.
I am in the stem cell corner but as of yet there is NO proof that stem cells benefit MS in anyway. I feel that that will soon change but as of now, nothing. My wife is a stem cell researcher and believes that stem cells will be used one day to cure and treat many diseases but at this point we do not know enough about them. My wife would say any place that claims a "stem cell miracle" should be approached with caution. Just my two cents.
I hope stem cells help some day Scorpion. However again they seem to fail the progressive patients again suggesting that something else in MS is happening.
Last edited by LR1234 on Sun Oct 11, 2009 7:25 am, edited 1 time in total.
That is one thing that still confounds me after all these years. Why does none of the treatments that benefit people with RRMS work for people with PPMS. There have been a lot of guesses over the years but nothing has been proven. I guess maybe because the present day meds. just reduce the number of relapses and in PPMS there is just progression from the onset?? However why then does revimmune show no benefit?? Geeze to early in the morning for all this thinking. Going to get me some coffee and an egg beater!!
I have a feeling we are probably all looking at MS the wrong way....maybe the inflammation in relapsing remitting MS is a sign that the body is making an attempt to heal, (which is why RR remits, the body manages to remylinate) in progressive MS maybe the healing mechanism has failed.
So when you have stem cells you are helping the patients who have the bodies willing to mend the damage.
What we have to work out is why the progressive patients bodies have given up on the healing process. Dr Wahls was one of those progressive patients but managed to get her body working again to remylinate.
There has to be some sort of gene or something that is turning the instructions for healing to off and in RRMS patients eventually the body also gives up on the healing and turns into SPMS.
So when you have stem cells you are helping the patients who have the bodies willing to mend the damage.
What we have to work out is why the progressive patients bodies have given up on the healing process. Dr Wahls was one of those progressive patients but managed to get her body working again to remylinate.
There has to be some sort of gene or something that is turning the instructions for healing to off and in RRMS patients eventually the body also gives up on the healing and turns into SPMS.
ewizabeth,
I don't feel that it is a "cure" at this moment. I do think it will help stop the progession of my MS. Nobody know for sure yet only time will tell us this.
I have had some relief from headaches , numbness and tingling in my arm, hand, legs and feet, fatigue and brain fog. It is not completely gone but I have hopes that it will get better as time goes on. I go back in 3 weeks to see how everything is healing.
Stopping the Tysabri is a decision not completely based on the CCSVI. It is based on the fact that it makes me feel bad and PML. I want to try LDN instead and I don't want any more of the Interferons.
Maybe this will help you.
Cat
I don't feel that it is a "cure" at this moment. I do think it will help stop the progession of my MS. Nobody know for sure yet only time will tell us this.
I have had some relief from headaches , numbness and tingling in my arm, hand, legs and feet, fatigue and brain fog. It is not completely gone but I have hopes that it will get better as time goes on. I go back in 3 weeks to see how everything is healing.
Stopping the Tysabri is a decision not completely based on the CCSVI. It is based on the fact that it makes me feel bad and PML. I want to try LDN instead and I don't want any more of the Interferons.
Maybe this will help you.
Cat
Holly - Shine On You Crazy Diamond - Pink Floyd
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
Cat,
If Tysabri were making me feel worse, I'd want to stop it too. I hope you get benefit from the CCSVI procedure. I can't tolerate interferons either and if I would have to stop Tysabri tomorrow, I'd probably go back on Copaxone next. I was on it for 18 months before Tysabri anyway.
To all who responded about my stem cell comment:
It just seems like they are making big promises and there is no way to know what they're really doing over there. What kind of oversight do they have in the clinics and hospitals?
If these were done in the USA and showing benefits by an actual clinical trial I'd feel more comfortable in considering to have it done for myself or a loved one.
Scorpion,
I also feel that stem cells have great promise for the future, but I think that whatever they are doing over there is experimental at best.
They're making big promises about outcome in the countries offering this from what I've read and it makes me wary of them. Maybe this is just their golden egg for awhile until it's found that it really isn't all it's advertised to be.
Sort of like the bee sting treatments or hyperbaric chamber of the last decade, etc...
If Tysabri were making me feel worse, I'd want to stop it too. I hope you get benefit from the CCSVI procedure. I can't tolerate interferons either and if I would have to stop Tysabri tomorrow, I'd probably go back on Copaxone next. I was on it for 18 months before Tysabri anyway.
To all who responded about my stem cell comment:
It just seems like they are making big promises and there is no way to know what they're really doing over there. What kind of oversight do they have in the clinics and hospitals?
If these were done in the USA and showing benefits by an actual clinical trial I'd feel more comfortable in considering to have it done for myself or a loved one.
Scorpion,
I also feel that stem cells have great promise for the future, but I think that whatever they are doing over there is experimental at best.
They're making big promises about outcome in the countries offering this from what I've read and it makes me wary of them. Maybe this is just their golden egg for awhile until it's found that it really isn't all it's advertised to be.
Sort of like the bee sting treatments or hyperbaric chamber of the last decade, etc...
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
Just to clarify, the stem cell treatment I was mentioning (and the one I think Ewizabeth meant, also), is overseas in Costa Rica and Israel. There is another internet site with forums for each. I am not sure of the theory behind the treatment, but it is different than, say, what was done in Chicago at Northwestern, where the immune system was ablated with intense chemo, and then reconstituted using stem cells.
The last time I checked the thread at the other site, it was like anything - some were reporting great improvements, some not so much.
The last time I checked the thread at the other site, it was like anything - some were reporting great improvements, some not so much.
Last edited by patientx on Mon Oct 12, 2009 5:45 am, edited 1 time in total.
I usually don't get involved in discussions like this. If you feel that a particular treatment is working for you then who is anyone to say whether you are right or wrong. However there is a huge difference between saying "this has worked for me" and saying "this will work for you". None of us is qualified to make that second statement yet the CCVSI proponents appear to be saying just that.
I do take exception to the following statement
I remember huge hype and exaggerated claims for goat serum, also for stem cells. Once these had been exposed as little more than pyramid selling schemes the true losers were those who had invested so much hope and not insignificant amounts of money only to be let down in the end.
Believe what you will, but when you try and convince others to your way of thinking you take on a huge responsibility. I would feel far happier about this site these days if it didn't feel like certain treatment options were literally being rammed down peoples throats.
I guess I'm an old timer here, that counts for nothing other than I have seen hype come and go and at the risk of offending some, CCVSI strikes me as lots of hype and very little substance.
Robin
I do take exception to the following statement
My MS has been completely halted. This is not some subjective assessment based more upon hope than evidence. I am part of a rigorously controlled clinical trial. I would suggest that the unproven hypothesis tag lies firmly within the CCVSI court.On the contrary, no MS drug can provide a halt in disease progression, while they target a completely unproven hypothesis and have toxic side effects.
I remember huge hype and exaggerated claims for goat serum, also for stem cells. Once these had been exposed as little more than pyramid selling schemes the true losers were those who had invested so much hope and not insignificant amounts of money only to be let down in the end.
Believe what you will, but when you try and convince others to your way of thinking you take on a huge responsibility. I would feel far happier about this site these days if it didn't feel like certain treatment options were literally being rammed down peoples throats.
I guess I'm an old timer here, that counts for nothing other than I have seen hype come and go and at the risk of offending some, CCVSI strikes me as lots of hype and very little substance.
Robin
Do not go gentle into that good night. Rage, rage against the dying of the light.
There have been numerous studies showing the benefits of stem cells on MS and EAE. Here is a very recent article showing success with stem cells on autoimmune diseases:
Autologous hematopoietic stem cell transplantation (HSCT) for autoimmune diseases: an observational study on 12 years of experience from the European Group for Blood and Marrow Transplantation (EBMT) Working Party on Autoimmune Diseases.
Background Since autologous hematopoietic stem cell transplantation (HSCT) has been used since 1996 for treating severe autoimmune diseases (AD) refractory to approved treatments, we aimed to evaluate long term outcomes and to identify potential prognostic factors. DESIGN AND METHODS: This observational study (1996-2007) analysed all first AHSCT for AD reported to the European Group for Blood and Marrow Transplants (EBMT) registry. Primary end-points were overall survival (OS), progression-free survival (PFS) and the 100 days transplant related mortality (TRM). RESULTS: 900 AD patients (64 % female, median 35 years) with first autologous HSCT were included, mainly: 345 multiple sclerosis, 175 systemic sclerosis, 85 lupus erythematosus, 89 rheumatoid arthritis, 65 juvenile arthritis, 37 hematological immune cytopenia. Overall, the 5 years OS was 85 % and PFS 43 %, varying widely according to AD type. By multivariate analysis, the day 100 TRM was associated with centre experience (p=0.003) and AD type (p=0.03). No significant influence of transplant technique could be identified. Age < 35 yrs (HR 1.37, 95%CI (1.1-1.7), p=0.004), autologous HSCT after 2000 (HR 1.47, 95%CI (1.16-1.86), p=0.0015) and diagnosis (p=0.0007) were associated with PFS. Conclusions This largest cohort studied worldwide shows that autologous HSCT can induce sustained remissions for more than 5 years in patients with severe AD refractory to conventional therapy. AD disease type, rather than transplant techniques, was the most relevant determinant of outcome. Results improved with time and were associated with centre experience. These data support ongoing and planned phase III trials to evaluate the place of autologous HSCT in the treatment strategy for severe AD.
source: <shortened url>
This next article discusses mesenchymal stem cells success with treatment of EAE: http://bloodjournal.hematologylibrary.o ... 106/5/1755
Anyway, we're all familiar with pubmed so I won't waste space reposting all the studies. In any case, it is true that the science regarding stem cells is far from complete, but it is inaccurate to say that there is no research showing benefits from stem cell treatment. Of course, it's important to be cautious with any treatment, and stem cell treatment is experimental and should be considered as such until conclusive evidence can be demonstrated. But really, I feel like with this disease everything is an experiment. In addition, and in keeping with the CCSVI debate, I find it odd that the same people advocating CCSVI often criticize the lack of research of stem cells. I'm hopeful that CCSVI will one day have a place in the treatment of MS, but the amount of studies on stem cells greatly outnumbers the studies done on CCSVI.
Thanks,
Rich
Autologous hematopoietic stem cell transplantation (HSCT) for autoimmune diseases: an observational study on 12 years of experience from the European Group for Blood and Marrow Transplantation (EBMT) Working Party on Autoimmune Diseases.
Background Since autologous hematopoietic stem cell transplantation (HSCT) has been used since 1996 for treating severe autoimmune diseases (AD) refractory to approved treatments, we aimed to evaluate long term outcomes and to identify potential prognostic factors. DESIGN AND METHODS: This observational study (1996-2007) analysed all first AHSCT for AD reported to the European Group for Blood and Marrow Transplants (EBMT) registry. Primary end-points were overall survival (OS), progression-free survival (PFS) and the 100 days transplant related mortality (TRM). RESULTS: 900 AD patients (64 % female, median 35 years) with first autologous HSCT were included, mainly: 345 multiple sclerosis, 175 systemic sclerosis, 85 lupus erythematosus, 89 rheumatoid arthritis, 65 juvenile arthritis, 37 hematological immune cytopenia. Overall, the 5 years OS was 85 % and PFS 43 %, varying widely according to AD type. By multivariate analysis, the day 100 TRM was associated with centre experience (p=0.003) and AD type (p=0.03). No significant influence of transplant technique could be identified. Age < 35 yrs (HR 1.37, 95%CI (1.1-1.7), p=0.004), autologous HSCT after 2000 (HR 1.47, 95%CI (1.16-1.86), p=0.0015) and diagnosis (p=0.0007) were associated with PFS. Conclusions This largest cohort studied worldwide shows that autologous HSCT can induce sustained remissions for more than 5 years in patients with severe AD refractory to conventional therapy. AD disease type, rather than transplant techniques, was the most relevant determinant of outcome. Results improved with time and were associated with centre experience. These data support ongoing and planned phase III trials to evaluate the place of autologous HSCT in the treatment strategy for severe AD.
source: <shortened url>
This next article discusses mesenchymal stem cells success with treatment of EAE: http://bloodjournal.hematologylibrary.o ... 106/5/1755
Anyway, we're all familiar with pubmed so I won't waste space reposting all the studies. In any case, it is true that the science regarding stem cells is far from complete, but it is inaccurate to say that there is no research showing benefits from stem cell treatment. Of course, it's important to be cautious with any treatment, and stem cell treatment is experimental and should be considered as such until conclusive evidence can be demonstrated. But really, I feel like with this disease everything is an experiment. In addition, and in keeping with the CCSVI debate, I find it odd that the same people advocating CCSVI often criticize the lack of research of stem cells. I'm hopeful that CCSVI will one day have a place in the treatment of MS, but the amount of studies on stem cells greatly outnumbers the studies done on CCSVI.
Thanks,
Rich
Rich
Sorry, I am aware of HSCT and the advances in stem cell treatments. I was not referring to those. There was a scam running in the UK where people went to Amsterdam to be injected with stem cells on a wholly unsupervised basis. A couple in South Africa got very rich whilst desperate people lost a lot of money. There is a huge difference between clinical trials and what are frankly 'snake oil' treatments.
Robin
Sorry, I am aware of HSCT and the advances in stem cell treatments. I was not referring to those. There was a scam running in the UK where people went to Amsterdam to be injected with stem cells on a wholly unsupervised basis. A couple in South Africa got very rich whilst desperate people lost a lot of money. There is a huge difference between clinical trials and what are frankly 'snake oil' treatments.
Robin
Do not go gentle into that good night. Rage, rage against the dying of the light.