Multiple Sclerosis & CCSVI

Fighting Irish

Interesting....


http://www.ms-society.ie/news/show/ccsvi/

Chronic cerebro-spinal venous insufficiency (CCSVI) is a new theory on the diagnosis and treatment of MS. Italian vascular surgeon, Dr Paolo Zamboni, believes his research shows that MS is caused by the narrowing or obstruction of blood vessels to the brain which leads to the build up of iron in the blood stream. This build up can then pass the blood-brain barrier leading to inflammation and damage to the central nervous system........

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206


Video
http://watch.ctv.ca/news/w5/the-liberation-treatment/#clip237656

bnt

One guy who had stent surgery, the first phase nearly six months ago, has been keeping a blog on his recovery: My hopeful journey into actual MS recovery

As you say: very interesting. If there's going to be any kind of trial or pilot programme here in Ireland, I'd expect it to give priority to severely-affected patients - not just because they'd need it the most, but also because they'd be most likely to demonstrate quantifiable improvements to their EDSS. I know doctors are emphasising caution and more testing, but I can see someone already in a wheelchair due to MS going "you need a test subject? Over here! Hello?" :pac:

pinkles

Any updates on this CCSVI research?
have emailed Dr simka in poland to arange procedure in a few months,in the meantime....im hoping that we will have a lot more info.
i only heard about this recently, absolute euphoria has dipped,,,now..after reading info from MS society , doubters, etc....trying hard to keep my chin up and dare to hope!!!!!
anyone got any more info?
Many Thanks

Lone Stone

Anyone know if you can travel there to get this treatment ?
*edit*
The only thing is tho if you do get this done and you have had ms for a while would the mayline (sepllcheck?) repair or stay the same hmmm

Fighting Irish

Lone Stone wrote: »

Anyone know if you can travel there to get this treatment ?
*edit*
The only thing is tho if you do get this done and you have had ms for a while would the mayline (sepllcheck?) repair or stay the same hmmm

As far as i know, i don't think damage can be repaired

Lone Stone

Fighting Irish wrote: »

As far as i know, i don't think damage can be repaired

Didnt think so,Ive been reading up on it and it sounds like they are really onto something thanks op for posting this link Its really picked up my mam's spirit's.

Fighting Irish

Lone Stone wrote: »

Didnt think so,Ive been reading up on it and it sounds like they are really onto something thanks op for posting this link Its really picked up my mam's spirit's.

It's a nice little lift all right but we'll just see how it goes, with fingers crossed

MSmum

Hi I was wondering if anyone here has MS and is around the same age as me. I'm 30 and got diagnosed with MS in Oct 08. Got replasping remitting ms and dont know anyone the same age as me with MS

pinkles

hi, im 31 yr old male, and have MS, woul dbe considered RR, have it for quite a few years, very stable thankfully .....
i nkow MS is quite common but i know very few people with MS personally.
It;s important to keep in touch with someone with MS even if it is online...

for me im keepin in touch with the exciting research into MS....they have made enormous strides in say 10-15 years..
i do believe that in a similar timeframe, MS will be a totally different condition ....Best of luck to you.

Fighting Irish

MSmum wrote: »

Hi I was wondering if anyone here has MS and is around the same age as me. I'm 30 and got diagnosed with MS in Oct 08. Got replasping remitting ms and dont know anyone the same age as me with MS

25, got diagnosed in Sep 08

Doing grand at the mo :cool:

MSmum

I'm just looking forward to when the tablets come out and I dont have to do the injections! Totally hate needles so having to do one once a week does not help. On the plus side, since I was dignosed last year I've had twins who keep me going along with a 2 year old. Weather is playing havoc with my hands. Weather affect anyone else

Fighting Irish

MSmum wrote: »

I'm just looking forward to when the tablets come out and I dont have to do the injections! Totally hate needles so having to do one once a week does not help. On the plus side, since I was dignosed last year I've had twins who keep me going along with a 2 year old. Weather is playing havoc with my hands. Weather affect anyone else

For me the needles are easy, it's remembering to use them that's the hard bit
I'm do them every second day

The cold doesn't really affect me, well if it does i don't notice it. The heat affects me a bit i think, i get tired easier.

MSmum

Some one mentioned to me that a gluten free diet can be good for ms suffers, any one heard this?

byhookorbycrook

There are all kinds of diets out there, some even claim to cure us :rolleyes:
Basically a healthy diet, get your omega oils and vit B especially.

MSmum

Ah grand, on iron and b12 so fingers crossed some thing works for me. yet another mri scan next week

byhookorbycrook

lordy how I hate MRIs, only ever manage if I squeeze my eyes shut going in and then open them when I get out.:D

Hot weather is the worst for me, I find my legs get weak when I get warm.

For those on the interferons, I found this a great help with the hot flu-ey times.
http://www.chillow.co.uk/2008/template/

Lone Stone

Has anyone been looking up on this , we got onto the ms society the other day to see if they had any information on it and no suprise not a clue your man i forget his name seemed to be trying to brush it aside. :rolleyes:

Who funds them anyway im starting to get paranoid that everyone is being paid off by the drug companies we even rang up orla hardamen couldnt get her so talking to someone else anyway asking them about it , no suprise there playing dumb then one of them ow yea eh well someone else rang asking about it a few days ago. No one in these place's seem to care about anything

MSmum

you trying to get info on the tablets?

Lone Stone

MSmum wrote: »

you trying to get info on the tablets?

:eek:
no im talking about CCSVI which is the topic of this post.

This is being sighted as a cure in some news paper's it stops further ms attack's you should be trying to get this asap.

bnt

The results of the initial U.Buffalo study are making headlines e.g. BBC. They say that more than 55% of the 500 MS patients they checked have some form of CCSVI.

I'm definitely interested, but a bit wary of confusing cause with effect here. I suggest reading the experiences of the guy whose blog I linked to on the first page: it doesn't sound like a "simple cure" for MS.

Fighting Irish

Lone Stone wrote: »

Has anyone been looking up on this , we got onto the ms society the other day to see if they had any information on it and no suprise not a clue your man i forget his name seemed to be trying to brush it aside. :rolleyes:

Who funds them anyway im starting to get paranoid that everyone is being paid off by the drug companies we even rang up orla hardamen couldnt get her so talking to someone else anyway asking them about it , no suprise there playing dumb then one of them ow yea eh well someone else rang asking about it a few days ago. No one in these place's seem to care about anything

http://www.youtube.com/user/irishbear76 seems to talk about it a good bit

LegacyUser

hi all i see there is alot ppl traveling to poland for the new treament
dnt trusth them as they are just after money they are doing the op in the uk now if u look it up
and my own taughts on it is ever 1 here in ireland with ms should fith to get the irish hosptils to do the op if enof ppl fith for it they will have to do sum ting

LegacyUser

I had been following this since the news first broke. I spoke to my neurologist just last week about it, and he was in touch with as he put it 'the Top MS guys in Ireland' in St Vincents and they wrote a long article on CCSVI and all three of them have no regard for it.

Looks like another money-making scheme unfortunately.

sillycow

I have MS too. I'm 33. I am very interested in CCSVI too and following it on facebook where all the latest updates are.
Kuwait are now giving all their MS patients access to CCSVI! A pity no one in this country is willing to try and make it available to MS patients here!
Have a look at W5(canadiam tv channel) 's latest program on it. avaialble on net. google it. They did a good program on it in november too.
I don't think it's a cure but i have heard a few people get it done and seen their positive reports. Some patients are able to walk and move limbs they have not moved in years! I don't think that can be placebo and i think it should be given priority over other things by the ms societies as it seems to be best hope in a long time.

byhookorbycrook

Are you on treatment, Silly Cow?

Fighting Irish

sillycow wrote: »

I have MS too. I'm 33. I am very interested in CCSVI too and following it on facebook where all the latest updates are.
Kuwait are now giving all their MS patients access to CCSVI! A pity no one in this country is willing to try and make it available to MS patients here!
Have a look at W5(canadiam tv channel) 's latest program on it. avaialble on net. google it. They did a good program on it in november too.
I don't think it's a cure but i have heard a few people get it done and seen their positive reports. Some patients are able to walk and move limbs they have not moved in years! I don't think that can be placebo and i think it should be given priority over other things by the ms societies as it seems to be best hope in a long time.

link?

Peyton Manning

Fighting Irish wrote: »

link?

http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297?ref=ts

I think this is the page referred to.

Macaonbhuit

You will find some detail on CCSVI studies being funded by the north American MS societies in Julie Stachowiac's blog here... http://ms.about.com/b/2010/06/22/research-directions-on-ccsvi.htm I think its good that they have recognised that there is a research direction here, though the funding has gone to those not currently at the forefront of testing the theory. However, if those results are positive, it will remove any doubt/accusations of bias. Seemingly there will be six monthly updates, so fingers crossed....

bnt

Haven't heard about CCSVI for a while until this popped up today, relating to a BBC program on the subject. One of their journalists went to a screening clinic and got a false positive i.e. she was told she has CCSVI though she doesn't have MS. The results of controlled studies are not looking good either. Still, people are getting angioplasty and stents done privately in other countries such as Egypt.

I'm not dismissing the possibility of a causal connection, but I'm not going to rush in to anything before the facts are in. No, I'm not a shill for Big Pharma, though I am on a long term MS therapy trial. They've spent a lot of money running tests on me, but I haven't seen a penny of it ...

Fighting Irish

Un-named wrote: »

I had been following this since the news first broke. I spoke to my neurologist just last week about it, and he was in touch with as he put it 'the Top MS guys in Ireland' in St Vincents and they wrote a long article on CCSVI and all three of them have no regard for it.

Looks like another money-making scheme unfortunately.

Either way i don't think the veins bringing blood to your brain should be in anyway blocked, can't be a good thing

byhookorbycrook

We were discussing this at the last Tysabri infusion. One of the girls has a friend who had it done, thinks it has helped bladder function a bit, but that's it.

I'm more interested in Ampyra, the new drug for walking, didn't get European approval,though FDA in States has approved it.

bnt

The FDA in the USA has issued a strong warning against the procedure:

• Be aware that there is lack of clear evidence of the existence of CCSVI. Furthermore, the link between CCSVI and MS and the safety and effectiveness of the CCSVI treatment procedure in MS patients has not been established.
• You should know that serious complications can occur as a result of CCSVI treatment procedures. Before you have any CCSVI procedure, discuss with your physician or other health care provider the signs and symptoms of such complications. If you have the procedure and you develop any of the signs or symptoms of a complication, contact your health care provider immediately.

Shtanto

Publicly available in Kuwait, also privately available in Poland. If you ask your vascular surgeon to fix the kinked pipes in your neck though, you might make better headway. The Kuwait teams are getting pretty good at this operation. As you expect, tools for the job don't exist yet. That stent was an arterial stent. Vein stents are still hard to come by. They need to be conical, not cylindrical. Otherwise they slip and kill you when they clog your heart.

Shtanto

You know given the amount of interest locally, I'm surprised there aren't any travel agents who've picked up on this yet. How do I ring Dr. Simka in Poland? If he's even still taking patients, I'd like to be on a list. None of the FB groups on CCSVI actually know how to go and get it fixed. Most of them presume I'm trolling when I ask

pbarr

Shtanto wrote: »

You know given the amount of interest locally, I'm surprised there aren't any travel agents who've picked up on this yet. How do I ring Dr. Simka in Poland? If he's even still taking patients, I'd like to be on a list. None of the FB groups on CCSVI actually know how to go and get it fixed. Most of them presume I'm trolling when I ask

I've had the procedure done in Poland a year ago.do yo want me to send you on their contact details.

Shtanto

Is that Dr. Simka you mean? What's he like? My Polish friend doesn't rate his home nation very highly, but then he did emigrate for a reason.

pbarr

Shtanto wrote: »

Is that Dr. Simka you mean? What's he like? My Polish friend doesn't rate his home nation very highly, but then he did emigrate for a reason.

Well its his team you deal with in fact you deal deal with a lot of people there. I don't remember much about him really.

Shtanto

pbarr wrote: »

Well its his team you deal with in fact you deal deal with a lot of people there. I don't remember much about him really.

Well now I'm in touch with Euromedic Poland, nice lady by the name of Marta Prus. So here's hoping I get a date and I'll be sorted soon enough.

Are you near the MS centre in Bushy Park yourself?

Also, turns out Dr. Sinan who does the due out in Kuwait now only operates in Kuwait. That's not a bother, because you can get a visa there in jig time.

I met Dr. Sinan there for a cupán tae on Monday (as you do). Now I'm trying to fill in this VHI claim form. Help appreciated. I typed up the business guts of this form earlier today.
23 questions they ask, so best foot forward I hope. Sure it's worth a go, right?

pbarr

Shtanto wrote: »

Well now I'm in touch with Euromedic Poland, nice lady by the name of Marta Prus. So here's hoping I get a date and I'll be sorted soon enough.

Are you near the MS centre in Bushy Park yourself?

Also, turns out Dr. Sinan who does the due out in Kuwait now only operates in Kuwait. That's not a bother, because you can get a visa there in jig time.

I met Dr. Sinan there for a cupán tae on Monday (as you do). Now I'm trying to fill in this VHI claim form. Help appreciated. I typed up the business guts of this form earlier today.
23 questions they ask, so best foot forward I hope. Sure it's worth a go, right?

No I live in Donegal so nowhere near Bushy Park.. I didn't use VHI because my understanding was that the VHI wouldn't cover it so I hope you can manage to get something from them. Good luck with the treatment, Hope it helps you. I didn't do anything for me but I heard since that it has more success with the RRMs than PPMs which is what I have.

Shtanto

From speaking with Dr. Sinan, it does indeed appear to be a more preventative measure against future problems. The only help I can offer against PPMS is LDN. Did you decide to go with Tysabri? Other than that, be sure to take 20,000IU vitamin D3 every monring. Sounds like a lot, but given where you live, it's what you need. Ask for this on prescription because it's pretty pricey to buy on eBay all the time. Our Irish Medicines Board would take fright at its own shadow.

pbarr

I have never been offered Tysabri and at the moment I'm seeing two different neuros and neither of them has mentioned it. I think Tysabri is more a treatment for RRMs than PPMs so that's why it hasn't been offered to me. I was on LDN back a couple of years ago for about 3 months but it didn't really do anything for me. I'm thinking of trying it again as I'm a bit more advanced now than I was then so maybe it would be more beneficial now.
What I am going to do is try the 20,000IU vitamin D3. How does it help you does it give you more energy?

Shtanto

LDN is a bit fiddly. Stick with it, and DO NOT take ineffectiveness at any given dose as the final answer. It's unfathomably variable. My dose, your dose, his dose, her dose - all different. Increment by 0.5mg until you start to have really weird dreams all of a sudden. That means you've either hit your dose on the nose or gotten to within a 0.5mg of it. I'm a 5.0mger myself. What you turn out to be is anyone's guess. Plenty of folks get nothing out of LDN because they don't put the work in. Put the work in. Don't be someone who gave up on it early. Yes, there is a chance you're the 1 in 5 which sucks. Also, Tysabri might not have been offered because you didn't ask for it. Yep. That's how dense the neuro's can be. You're the sick person. With MS, this means it's your job to know what to do. Do not expect the neurologists to be helpful in any way. Admittedly, you probably can't throw them very far right now without sufficient catapult assist, but they haven't proven themselves useful in any way to me yet. I don't think any neuro has lamented another sod in a wheelchair. Clinical detachment means they don't have to.

Get started on 20,000IU D3 yourself and see what happens. I can't say what it'll do, but it ought to be positive. It has helped me, so I'd say it'll help you too. Check what ways Tysabri is licenced for Ireland. If it's only for second times a charm RRMSers like me, then you're out of luck. If the licence is more general, whoopdidoo I get the distinct impression that whoever your neuro is has dropped the ball plenty in the past. Be it glue, tape or sticky paste, no amount of adhesive will help now.

Start here: http://prezi.com/ddidkikcnuq0/approaches-to-curing-ms/?kw=view-ddidkikcnuq0&rc=ref-13435536
If we want to be cured, we'll have to start work yesterday. There's much more than the science needs doing. CCSVI is a part of the picture.

byhookorbycrook

I must be really lucky with my neuro, she is very proactive and up to speed on all the latest info.

Shtanto

Yeah, some of us get lucky that way. Any neuro who doesn't offer LDN isn't worth much IMO. It's worth a try. Maybe it won't work for you. Maybe you're the 1 in 5. What you want to know is your Th subtype, your HHV6 load, your D3 requirements, your optimum LDN dose if that'll work, all the vitamins (and yeah you'll need a b6 to be taking the LDN to avoid the depression from opioid peptide buildup) and maybe even stem cells. Of course Ireland is a 20th century nation in a 21st century world, so don't have hopes on that. Stem cells are 20-30 years away for Ireland, not because the science is lacking, more because the politics is slow. Motions to pass the Taoiseach a hanky for a sneeze would take the best part of a month, and you can bet the opposition will want one too for spite.

It's the choice again. We'll either wait for the cure (aka Godot) or shoulder the wheel up the hill ourselves. Strikes me that the eyes to approve the science done are too busy to read what's coming out. CCSVI is not the cure. Damn good treatment, and it buys us a lot of time for waiting. What odds will you give me for a cure by my 50th birthday? (~20 years)

In other news, Dr. Sinan now has a copy of the VHI claim form. He's a busy man, so more news on this one in 3 months.

Shtanto

19 days to go folks. Things are starting to get a bit more real. Pardon the bump. Actually finding the clinic on google maps is proving to be a little bit tricker than I first presumed. Evidently, Euromedic Poland (Katowice) is a multi centre establishment with different buildings for training, rehab, supply, physical rehab and administration. A full review of the tip will hopefully appear later.

bnt

The latest controlled study results coming out of Canada seem to indicate that the CCSVI hypotheis is basically gone, at this point.

Interpretation: We detected no differences in the proportion of venous outflow abnormalities between patients with multiple sclerosis and healthy controls. Moreover, our study revealed significant methodologic concerns regarding the proposed diagnostic criteria for chronic cerebrospinal venous insufficiency that challenge their validity.