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gingermagic

Just returned from Bulgaria liberated

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Christina

Just to add, if you'd like a balanced view and the opportunity to see and hear a CCSVI MS Society meeting online, then follow Andy's link that he's posted in another thread.

 

Chris x


Edited by Christina

Not waiting for the storm to pass, but learning to dance in the rain ....

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gingermagic

I understand how you would consider this to be a balanced point of veiw. But you must understand that the the existing weight of information (coming from the MS society for example) refers to CCSVI negativeley. Michelle Finley illustrated this point brilliany.

 

If the MS society says that this is an exiting area of research and that more research needs to be done......if the MS society is not going to fund the research who will. The government will not. Col collected 10,000 signatures (when he only needed 3,000), what for a standard photocopied letter.

 

Research on beta interferon continues although the benefits of Beta interferon are just as patchy than the benefits of liberation. Oh by the way beta interferon is no use for me, I am PPMS.

 

In this discussion, the thing that strikes me is those who do not have a progressing deteriorating illnes talk calmly about patientce, the need for further research and calm. Where as those of with worsening disability are watching wating and hoping.

 

In medical discussions, medics will always play safe. How can anything change anything if your dissusing with those who play safe.

 

Clinical trails that take years are one thing. If you have years then good for you..........I do not.

 

The only fact I know is that I felt like most of us feel.........tired and washed out. My veins were found to have critical blockages. I was ballooned and I feel much better.


Billion year old carbon

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Christina

I think everyone is entitled to their viewpoint and I respect your decision to have the treatment. It would not be my choice at this point in time - I won't rule it out but I agreed with the guy with MS on the panel, until there is more evidence that MSers actually are affected by narrowed veins and until this is proven not to be yet another treatment that everyone gets very excited about and then is proved to be ineffective, I won't be signing up for it. I guess it comes down to those who are more likely to take the risk of treatment and those who are not. I tend to be naturally cautious but I do support more research so that everyone can know for sure whether there are benefits.

 

If there are people who are being helped by liberation, then that's fantastic but even amongst those who have seen good results from the treatment so far, it is still not really known if this will last and as a lot of the evidence is anecdotal, until trials produce reliable evidence, then NHS treatment will never be a possibility for MS sufferers. I do know someone who has had the procedure and is yet to notice any difference in symptoms. There is still so much that is unknown about whether veinous insufficiency is causing MS since people with or without the disease can have narrowings and it would seem from what the German neurologist on the panel was saying that the CNS often has narrowed vessels and compensates by using other blood vessels. So I would support more research and the MS Society seemed to be saying it would consider requests for research funding - that's what I understood anyway. It also made it clear that it would report the findings of research so that members can make their own choice but that it never recommended any particular treatments because that is not its role and I agree with that.

 

As I see it the only way to get the NHS to take liberation seriously is for lots more research to be done including trials and that might take a few years. In the meantime, I guess people are left with the choice of whether to pay for treatment or to wait. There were arguments put forward on both sides in the meeting and I did feel it was a balanced discussion, but others can judge by watching it.

 

Chris


Not waiting for the storm to pass, but learning to dance in the rain ....

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Lindyloo

This is why the MS society should get off their arses and start up the Research - afterall its what we all want... i cant believe the MS society are negative with their attitudes to this amazing theory.....hush hush hush....

we all need to stick together.... CCSVI makes alot of sense....

 

Im really happy for you Ginger and i think you are an inspiration and l love your fighting spirit.... Im RRMS for nearly 10yrs and ive been invited to lots of MS Society functions with all the big SUITS ....i think alot of it is bullshit.. we MSERS have to have the say in what happens with MS Research and what we want with all the funds not the SUITS ...

 

keep talking guys to whoever will listen!!


LindyLoo xx

" This moment will pass " (Bono U2)

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colmmc

Some Days I just want to SCREAM

 

colmmc

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Tania B

I sense that the whole subject is dividing people on this forum. Am are wrong?

 

T

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Christina

Well I guess it's likely to do that Tania - all part of life's rich pattern eh? Healthy discussion is good as long as it doesn't get too emotional. There are always two sides and people are entitled to differing views - no-one should be made to feel bad because they express them as long as it's done in a respectful way.

 

Lindyloo - from watching the webcast I didn't think the MS Soc was particularly negative, but it was cautious about the treatment until there's more evidence and the panel reiterated that point.

 

Chris x


Edited by Christina

Not waiting for the storm to pass, but learning to dance in the rain ....

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happyandy

Not sure Tania,

 

I certainly hope that opinions can be aired without the poster being "flamed" although I confess I am inclined not to post when LDN is mentioned for example.

 

With CCSVI, it is interesting the number of MS'ers that have had neck trauma. Liberation seems to have some positive effects. I do not believe it is a cure as I cant see how the damage to nerves can be reversed. What I would hope is that progression would stop.

 

The fact that steroids and drugs that are designed to interact with the immune system (CRABS, Tysabri and CAMPATH) work suggest to me at least, that there is an auto-immune component to MS. At least with RRMS.

 

As far as being an early adopter of CCSVI, the decision to go for liberation is more urgent for PPMS'ers than RRMS'ers. With clinical trials taking years, a judgement needs to be made whether to wait and be more disabled or take a chance.

 

What makes me uneasy is all the clinics springing up over Europe offering the procedure at great cost who seem to find evidence of CCSVIon their dopplers easier than UK radiologists.

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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gingermagic

All good stuff,

 

I think all this stuff about waiting for the NHS to get on board is dangerous. Don't get me wrong the NHS is one of the greatest things that this country has.

 

I felt safe and cared for.........until I developed a chronic illness.

 

Me: I have bad fatigue. It's ruining my life.

 

Neurologist: Try amantadine.

 

A considerable time passes and I deteriorate

 

Neurologist: Well what did you think?

 

Me: I felt like a stone with a headache. Anything else?

 

Neurologist: Try modafonil.

 

A considerable time passes and I deteriorate.

 

Neurologist: Well what did you think?

 

Me: I felt like a stone with a headache...................with fatigue. Anything else?

 

Neorologist: Sorry mate that your lot.

 

Me: What about liberation?

 

Neurologist: Sorry mate that not been proven to work.

 

Me: Whats my alternative.

 

Neurologist: You could live in a bag.

 

You get the idea!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Edited by gingermagic

Billion year old carbon

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happyandy

Hi Ginger

 

I have just finished my last amatandine tablet for fatigue.

 

Since starting I've never had so many afternoon naps.

 

Its also worth noting that the family of drugs that CAMPATH belong were invented in the 70's and they have only got thru clinical trials in the last 4 years

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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colmmc

I met with my neuro only last week he said at the start " CCSVI stuff and nonsense."

After 45mins of heated debate He said Quote: "I have got nothing to offer you,And if I where in your Position I think I would go for it as well. Please keep me updated on your treatment I am very interested."

Its easy for us the chosen ones with PPMS, Being told you have MS is tough it takes a while to get a handle on it. To then be told the type you have "we can't help you" Well that takes it to a whole new level.

Its a different mind set between I guess, All I am saying is we don't have the luxury of time, Every day month year we loose something. We have to do what ever we can to stop it NOW.

and then wait for a permanent cure.

colmmc

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Tania B

I feel it is helpful to stimulate discussion and share our ideas and opinions. Personally, I don't recall reading claims that the liberation treatment is an absolute cure but I understand that people with MS have had some positive benefits to various degrees.

 

With reagard to fatigue, I'd like some answers.

 

T

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gingermagic

Zamboni has said,'liberation is not a cure'.

 

He has also said those that are liberated will experience good and bad days. This is true, since liberation I have had highs and lows. But the highs increased substantially.

 

It is only a relief from symptoms.

 

Andy, I think your point about autoimmune is very relevant. Research has shown that MS causes an autoimmune response rather than visa versa.

 

Read this. http://www.suite101.com/blog/daisyelaine/i...immune_disorder.

 

I cannot help but feel that if you have MS, you are on your own.


Billion year old carbon

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happyandy

I agree with what colm says Ginger.

 

Bad enough to get MS but being told you have the one where they cant do anything is the real bummer.

 

That's why I advocate using DMD's while you have got the chance.

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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Bernadette

I gather that the liberation treatment might help PPMS. What about SPMS?

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Michelle
I sense that the whole subject is dividing people on this forum. Am are wrong?

 

T

 

 

 

Hi Tania,

 

 

I don't believe this subject is causing division on the forum. I have been here for a few years now,and have seen a few subjects being discussed. We all have something in common here,and that is MS. This is what unites us. So don't be concerned about division. It's quite healthy to have discussions. I can understand colm wanting to scream. When you know that something/someone is real,and it's not being taken on board it makes you feel this way. I feel the same way about Jesus. I could preach till the cows come home,but at the end of the day, it is up to the individual to believe.

 

 

Lets continue to support the people who go for this treatment. I for one look forward to more news with regards to this proceedure. I think if it gives you relief from the symptoms of MS then that's great news. There's always hope!

 

 

Regards

 

 

Michelle :hearts_circle:

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brainless

two different viewpoints always better that one; easier to make a decision with all pros and cons out in the open.... I think this is great and exactly what I came here hoping for!!

 

:huladancer:


Lottie, x

 

LIVING IN THE MOMENT

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Lindyloo

At the end of the day... whatever type of MS you have we all should be banging on the MS Society's Door - as none of us know what tomorrow will bring and this is the most hopeful news in a long, long time.... I believe the MS Society are a very,very rich worldwide organisation that should be pumping money/donated funds into this research ASAP.... and not sitting on the fence being cautious.

I agree with Mish in that freedom to say how we feel is excellent and it is so very important to be truthful in what we believe...

 

Im not saying i think everyone should book tickets to fly wherever... and get treatment...i just want to see the research get speedied up... with the backing of the MS Society.... my belief is their no 1 priority is to find a 'CURE'... for this shitty illness... so why not have some balls and give it 100% backing...

 

Love Lindyxx


LindyLoo xx

" This moment will pass " (Bono U2)

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ptlike

Hi All

 

Just thought I would throw my views in however I am far less knowledgeable on the subject than most. I do feel there is something relevant about blood with the condition. I know there is a condition that mimics MS that taking asprin can help, is that a coincidence? I do also believe there must be an autoimune element and agree with Andy 'first for everything' :lol4: But does the help with liberation reduce the autoimune element? Or is the cause for needing liberation an autoimune action? Are there not other ways of getting the same effect, such as blood thinning measures? How long term is this procedure? Would long term statins help without surgery and do you need to take statins after being liberated? Is it not true the procedure is not without a fair amount of risk? I have the greatest respect for the pioneers that have taken the plunge and had or going to have liberation and I also think it is great they are prepared to discuss it on here :huladancer:

Best wishes

 

Peter

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colmmc

Today I won't be screaming,

I'll be mostly singing ....

10 Days to go.

Colmmc

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gingermagic

What a fantastic disscusion, well done everyone!

I do understand why Col wants to scream, not shouting about potentially amazing treatment has got us nowhere. It's not personal. I do not understand why the MS society is waiting for further research, while not funding it.............while we deteriorate.

 

Huge funding is going into drug companies for drugs that do nothing for us, other than masking symptoms.

 

Anyway, got to go my little girl is asking me if she has her shoes on the right feet. We are going for the first family walk in two years.

 

Love to all.


Billion year old carbon

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Michelle

I think the MS Society etc should listen to the people 'us' who donate money. It is about time that they researched LDN etc. At this stage are they really supporting our cause?

 

 

Regards

 

 

Michelle x

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Christina

Just a thought, perhaps the MS Society should have a referendum of members to see if they should spend their finances on being more pro-active in pushing for research on this or LDN for that matter. They have said they will consider funding CCSVI research but I guess that depends on researchers actually coming forward with proposals. I think it's right the NHS should be pretty sure that treatments work before offering them and they won't do that without enough evidence that's for certain.

 

I don't know too much about how the Society works, but can and do they actually commission their own research or do they only respond to research applications from outside bodies?

 

Chris


Not waiting for the storm to pass, but learning to dance in the rain ....

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Summer
I feel the same way about Jesus. I could preach till the cows come home,but at the end of the day, it is up to the individual to believe.

 

I believe in Jesus too but I don't have the urge to preach, it did something different for me, mind you, my brain is wonky so I suppose it would :cheerleader:

 

I have enjoyed hearing both sides of the topic, I didn't see it at all as divisive and I think it is very useful to have both sides, it helps with making decisions about things.

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Tania B

I am so pleased that I was mistaken about sensing a bit of division on the forum and wish to apologise if I have caused some friction myself.

 

According to Albert Mehrabian (a psychology professor) there are 3 elements of any face-to-face communication. The largest part of communication is non-verbal, such as body language (55%), then comes tone of voice (38 %) and finally the smallest part is the words used (7%). Here we can only communicate with words, which can make it difficult for us. We cannot see each other's body language and facial expressions or hear anyone's tone of voice. I suppose that's where the 'emiticons' fit in.

 

I agree with Gingermagic that this has become a good discussion.

 

Tania x :cheerleader:


Edited by Tania B

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