Frequently, when the topic of chronic cerebrospinal venous insufficiency comes up, it seems like that also becomes the time for berating neurologists.



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(From Topix Neurology)

Psst... that's because CCSVI isn't profitable to the pharmas, who the neurologists are in cahoots (and pay) with!

"The anti-neurologist virtual drum-beating and sign-waving quickly moves into accusations that neurologists actually do not want to find a cure or even relief for people with MS, as they are: 1) in the pockets of Big Pharma, and/or 2) threatened with the idea that MS may actually be a vascular disease, not a neurological one, which would quickly deplete their patient base."

1) YES

and

2) YES

Well, the above may be true, in many, many cases, but think about what a Neurologist's job is. They have to try to diagnose people with all Neurological problems and yet they can never cure "ANY" of their patients. Maybe Neuro-surgeons can, but not MS Neuro's or General Neuro's.

They can treat all sorts of Neurological problems, but their whole specialty must be a real downer, because no one gets cured. The CCSVI Procedure is a treatment, that can help many people. For many it is like a cure, but you still have MS, that "title" doesn't go away even if the symptoms do.

You still may need some treatment drugs for other issues that MS brings, like tremor or spasms. The CCSVI procedure may give a person many/all improvements, but others get only a few benefits, so having a Neuro or a MD to take care of these issues is still important.

They order tests, MRI's, maybe steroids, check your eyes for other problems, etc., but still can't cure you. 150 years proves that one.

Really it is a Vascular specialist or an IR's issue, and the Neurologist really shouldn't be involved, unless they want to. You don't go to your Neurologist if you need a tooth pulled.

I think people are comparing apples and bananas and so are the Neurologists. You should see a Interventional Radioligist or a Vascular specialist and still be able to discuss the procedure with your Neurologist, without getting kicked to the curb, or told what to do. JMO

Thanks NewsBot.

Lady's right, you shouldn't even ask about a non Neuro Problem with your Neuro. Ask your PCP for a referral to a Vascular Doc.

Honestly I could understand them being skeptical in the beginning but most either make fun of it, or Zamboni, quote incorrect facts, and do not follow the research adequately.

Then after thousands of anecdotal precedures being done to still not be curious? I just find it odd that they " supposedly some of the brightest" would not read more and be informed.

My daughter had to change neuro's. She went from a hostile, old guy who made fun of Zamboni and misquoted facts and used scare tactics, to a younger more curious skepticism, but equally uninformed.

When will they learn this stuff? After they lose enough MS patients?

My husband says they suffer from Semmelweis Reflex, which is named for Ignaz Semmelweis who instituted hand washing to prevent childbirth fever ( a killer of many women before microorganisms were known about)and was made fun of....never being recognized until after he died.

We must never let this happen again.

Lady, you made some good points. And while someone wouldn't go to a neurologist for a heart condition, they would for a stroke - which is a vascular event. I think that should CCSVI prove to be true and more procedures are done with positive results, many of us will be in the same category as stroke patients - seeing a vascular/cardiologist and a neurologist.

There is a lot of skepticism out there on many treatments that have proven to be effective. Several are MS related like CCSVI. I wish this were not the case and doctors/researchers would be more open minded. LDN is another one that I have been keeping my eye on. But here again, the cost is relatively low and side effects almost nil (from what I have read).

MegansMom - You have an amazing story to tell and am glad you have joined us to share it.

I too would love to hear more about your daughter journey. My own regular MD, MS MD, MS center, and several others in my circle are not willing to discuss this and have pointed out some valid questions about this procedure. No, its not profitable for big pharma, but I am having a great deal of trouble thinking that my own neuro would not want me to be fixed if I was broken. They have bent over backwards to help me, treat my symptoms and ALL of my neuros have immediate family members with this disease. Why would they not seek it for their wife or child? Makes my head swim.

Tell us your story. im listening.

I can say that I have a good neuro. She is open to all ideas I bring her and she is trying hard to treat my symptoms. We have discussed several options including CCSVI.

Her opinion is... she has read the studies, and she can see improvements made for people who have more brain lesions than spinal. She has looked at my veins and does not see any narrowing or blockage. My lesions are mostly in my spine and she doesn't think I would benefit from it.

She does believe I would benefit greatly from stem cell treatments if done properly, but it is not an available procedure that I can easily get. She is also hopeful for the SK drug that is in the final testing phases and may be available in the next couple of years. This is the sea anemone peptide complex that I have been following. When I asked her about it the first time, she honestly had not heard of it, so I emailed her the information I had and the contact number for the Dr in charge of the study in California. She contacted him and followed up on the information and she makes sure I am aware of any new developments such as human testing.

I think it all depends on the doctor. There are some who are in it only to make money and there are some who have a true desire to help others, or who have had experiences in their own lives that allow them to see the true effects of this disease. Neuro's mom has Lupus. This makes her more sympathetic than my last neuro.

I don't think every treatment is right for everybody, if it were, we would all have the same symptoms and lesions. I think you need to find what works best for you. If your neuro isn't open to new ideas, or doesn't want to listen when you speak, then it is time to find a new doctor.