Multiple Sclerosis & CCSVI

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.