There are more than one variable. There are the facts that all these cases have had various doctors, stents vs. no stents, dilation in different places, etc. There is so much difference from one case to the next because it is a disease that can attack in many different ways. Somebody needs to study the set of presenting symptoms and see if there is any commonality to that, and whether there is any correlation between MS symptom and vein problem. Dr. Simka has said that the most common feature he has seen is a valve problem.
There could be a questionnaire to do with prominent symptoms, and prominent reversals.
But to me the hardest problem is that everybody with MS has to be treated. What we have now is research in Canada that's depending on donations, people that have enough money paying for treatment with a variable price, which may or may not include the cost of a trip to India or somewhere else overseas from where they live, and no agreed upon standard of care for a disease that we know very little about.
It is congenital but it continues and may morph into MS or something worse at various times during human lifetimes.
We have venoplasty with balloons that can be used sometimes to restore venous flow and that will sometimes result in significant restoration of the damage it causes.
Since MS symptoms have never been addressable in this way before and the prognosis for the majority of MS sufferers has been bleak, and this treatment, though it is unpredictable, has had a lot of very good results, most MS victims will want it. But the most common thing MS does to people is to make it impossible for them to earn an income (after they have become Secondary Progressive). Secondary Progressive MS (and Primary Progressive MS) has a problem: Paulo Zamboni said these patients do not benefit as much (hardly at all) from the procedure.
There have been dramatic exceptions. The users of stents have been able to maintain better patency. Zamboni says that the azygous vein is associated with this more disabling form of MS, and they seem to be harder to assess and work on. So all in all I think we still have a long way to go in studying this disease.
It will be less profitable to sell MS drugs if all of the less severe cases (who have a better chance at successful recovery) are treated. But these are also the ones being prescribed the expensive drugs, so this may (may) result in less insurance claims. And it has been said that at least progression can be stopped for the more disabled.
But the MS drugs that *were* so expensive, were the reason there was money around for putting a lot of investment into treating people at earlier disease stages. The most affected, with the least hope of improvement, will be the persons who have the least earning power, and so the least ability to pay.
So what will they do? What will governments, and charities, do? I think it is critical that it is determined whether this treatment stops progression or not. The easiest way to find this out might be to ask the patients themselves, the ones who had converted to SPMS *before* treatment, if they think, after one year (or more if they can be found) that their disease progression has stopped, or is starting to reverse itself. This self assessment is I believe, as valid as any, after one year.
Placebo, I think, can be discounted also, after one year. MRIs are going to be written about by the people running the tests. And self-assessed items like these do not benefit from controls. I think the reason controls are ever needed in MS is that the disease is so unpredictable. Otherwise we would have enough data on its natural history after 150 years, to be able to know how controls would fare after 1 year of no treatment.
My other statement is that I think EDSS can be self-assessed, or at least, does not need a neurology appointment. It is very straightforward and descriptive, so that it is obvious if a person can walk 50 yards without any support, needs bilateral support, or not, etc.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
I am not a doctor. Do not take anything I say as medical advice.