"whining about neurologists"

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

"whining about neurologists"

Postby Cece » Tue Jan 11, 2011 4:53 pm

Awhile back, Dr. Sclafani made reference to that we were much more action-oriented lately, comparing notes on treatments and IRs, and less of the whining about neurologists.

So, I am sorry to disappoint, and perhaps this is backsliding, but Oh MY. I had an appointment yesterday with my MS specialist. I had brought up CCSVI a year ago and he blew it off, said it was way too soon, made some dismissive comments...but this time, I had brought in my MRV because it has the standard MS MRI on it too. I was not looking to discuss CCSVI, I wanted to know if I had any new brain lesions, it was my first MRI in two years.

He asked me what I knew about CCSVI.

I kept it simple and said that I knew a lot, I'd been reading up.

And that was it, he was off on a rant.

Some high points from his ranting:
* 2 deaths. Did I know there had been 2 deaths? 2 deaths.
* everything we read is just anecdotes
* stent migration was very serious, that guy was very lucky, he could've died
* He's had a few patients who have done this. One came back thrilled because he feels better. But his neuro exam went down by a point. But the guy still feels better.
* possible symptomatic relief but nothing to do with the cause of MS
* no way for reflux to be involved, no iron in the brain, this was all just made up out of nowhere
* Zamboni's original 100% findings haven't been replicated
* have I heard about the Amsterdam study?
* I've heard about the Amsterdam study (second time brought up)
* absolutely has been determined that the association between MS and CCSVI is 65%; other neurological diseases 50%; normal population 40%
* restenosis is likely
* it's fraudulent to charge it to insurance
* when I suggested the risk of injury and clotting in the jugulars, he actually dismissed that one, since it wouldn't matter if it clotted off since these veins are unnecessary, but a brain infarct would be bad
* Zivadinov is no longer behind this
* there's some "guy out in San Diego" (I'm assuming Dr. Hubbard) (it's as if only neurologists counted, Hubbard and Zivadinov, might as well refer only to Salvi instead of Zamboni!)
* low cerebral perfusion in MS is due to brain atrophy and needing less blood flow, not due to blockages
* should only be done in controlled sham trial, but there are long waiting lists
* doctors are just popping up everywhere to do this, it's a money grab
* bee stings, LDN, prokarin, bee stings again

It wasn't a discussion or a dialogue, which I might've enjoyed; it was a one-sided rant. He was sometimes right but more often wrong and it was all so strongly stated. I could've countered his points, but didn't think it would do much besides inflame him further.

Once he established that I'd heard everything he was saying and knew that he strongly advised against it, he returned to looking at my MRV. He found my stenoses in both jugulars to be remarkable. It's easily the worst he's seen yet from the discs his patients have brought in. He mentioned that he's even written a few requests for CCSVI MRVs for patients, which surprised me.

He acquiesced to signing a note saying that I had MS, which Holly had asked for in order to be treated by Dr. Sclafani.

He gave me samples of Nuvigil to replace Provigil.

We had no time for the neuro exam, no time to look through the MRI and see if I had any new lesions. He scheduled me back in two months.

It was a stressful appointment. If I knew less about CCSVI, I would've been scared by some of the things he said. It's hard for me to try and see it from his side. I think he believed every word he was saying. I wonder where it's getting reinforced, for him to know only the negative and none of the positive. While there was so much bias from him in such a short time as to be ridiculous, it did seem genuine.

I am not happy that other patients will be getting the same misinformed rant from him.
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Postby Crystwo » Tue Jan 11, 2011 5:14 pm

Maybe they are all afraid of seeing THEIR $ going out the window as each of us takes our business and insurance money to the IR's. I know mine gives idiot answers, responses and threats also. I have tried 4 neuros in my area...they all seem to be about the same. A good one seems awfully hard to find.
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Postby David1949 » Tue Jan 11, 2011 5:19 pm

2 deaths! Wow! Did you mention the 12 who died of PML from using Tysabri? Cece far be it from me to tell you what to do, but if it was me I'd tell him one thing; adios! You can find another neuro.
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Postby MaggieMae » Tue Jan 11, 2011 5:46 pm

Sounds like my husband's neurologist. Believe me there are many neurologists and even general physicians who are repeating the same statements to their patients. As CeCe said, if she wasn't informed she would have been scared by some of his statements. Most patients don't have the knowledge that CeCe has regarding CCSVI.
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Postby Donnchadh » Tue Jan 11, 2011 7:18 pm


By any chance, is your doctor named Nero Oligist, MD?


Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby David1949 » Tue Jan 11, 2011 9:58 pm

BTW Cece I'd bet that you know more about ccsvi than your neuro. I guess it just grinds me that the arrogant SOB talks down to you. If he had a majic cure for MS then maybe he'd have a right to do that , but he doesn't have a cure. He doesn't have anything other than a bag full of overpriced drugs that don't do much good.

If more people would tell their neuro to "shove it" maybe they'd develop a better attitude. :evil:

OK that's just me. Maybe you'd just create more grief for yourself if you did that.
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Postby PointsNorth » Tue Jan 11, 2011 10:08 pm

Wow Cece, I think they are all singing from the same widely-distributed song sheet. Sounded like an instant replay of my latest appointment - some facts, nicely mixed up with untruths and opinion.

David - PML cases up to 77 as my neurologist pointed out.

Where am I? I want to hibernate. Wake me up in the Spring please.

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Re: "whining about neurologists"

Postby Hopeful10 » Tue Jan 11, 2011 11:32 pm

Cece wrote:Some high points from his ranting....

* Zivadinov is no longer behind this

Does anyone know if Cece's neuro is right about Zivadinov no longer supporting CCSVI? And if that in fact is the case, has Zivadinov explained why not?
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Postby MrSuccess » Wed Jan 12, 2011 12:11 am

the old song and dance. It must have been hard to sit there and take it all in when someone has their facts all mixed up ...... or plain wrong. :twisted:

hang in there kid.

just a suggestion . send your Neuro a ONE page letter outlining the best of what is happening with CCSVI . Mail it in.

what I find appalling is the attitude of this guy . He is being PAID to treat you . You are essentially .... his customer. You should demand that he treats you with respect. And gives you a chance to speak.

End your letter with that. Send a copy to his professional association .

Everyone has someone they answer to.

'' brow beating '' a person suffering with an illness ...... is despicable.

Stay Calm ....... and .......Carry On

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Postby CD » Wed Jan 12, 2011 12:28 am

Biogen reports four more Tysabri cases, one death

* 79 confirmed PML cases as of Dec. 2, with 16 deaths

* Estimated incidence of PML per 1000 patients is 1.0

NEW YORK Dec 16 (Reuters) - Four more patients taking Biogen Idec's (BIIB.O) multiple sclerosis drug Tysabri have developed the serious brain infection known as PML and one of them died, according to the biotechnology company's monthly update.

The four new confirmed cases of potentially fatal progressive multifocal leukoencephalopathy, or PML, were detected between Nov. 2 and Dec. 2, the company said. That brought the total number of confirmed cases as of Dec. 2 to 79, with 16 deaths.

Biogen, which markets the drug with Ireland-based partner Elan Corp Plc (ELN.I), said the rate of PML cases per 1,000 patients has edged slightly higher to 1.0 from 0.96 and is likely due to more patients being on the drug for more than two years.

The chances of contracting PML tend to increase the longer a patient is on the drug, which is considered the most important growth driver for Biogen and Elan. The incidence of PML cases per 1,000 patients who have received between 1 to 12 infusions of Tysabri is just 0.01, but that rises to 2.05 at more than 24 infusions, according to Biogen's statistics.

(Reporting by Bill Berkrot. Editing by Robert MacMillan)
From a Reuters press release, December 16, 2010


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Postby mazza » Wed Jan 12, 2011 2:08 am

Oh yes the patronising rant, I've heard it too. Quite insulting.

Guess we can vote with our wobbly feet...........
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Postby AMcG » Wed Jan 12, 2011 3:24 am

I was hopeless in my first two appointments with my neuro (cog fog) and both times I wrote him a letter after the appointment answering the questions he asked better than I did during the appt. I am glad to say he is not like yours and has an open mind about CCSVI.

If I was you Cece I would write your neuro a letter, making it as short, simple and friendly as possible but gently correcting, with references, all the misinformation he gave you.

I am sure you have both the tact and the intelligence to do that well and your knowledge of CCSVI is second to none.

The neuro has no more right to hold biased and unsupported views than we do. Rather he needs to deal with the real facts. I would hope the letter would at least have the effect of stopping him treating you like a fool. If it actually started a meaningful dialogue that would be brilliant. If neither happened I would give him the boot and find another neuro.
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Postby Blaze » Wed Jan 12, 2011 5:35 am

I'm sorry you were subjected to that Cece, but I'm not surprised. Does he know what a leader you have been on this to all of us? I suspect not, or the rant would probably have been worse.

I'm fortunate that my neuro doesn't go off on me like that. He just makes it clear he's highly skeptical. I think I was the only MRV he requested. He would not refer me for a Doppler US, but my family doc did that, so I was able to be tested by the best in Dr. MacDonald's office.

Yet, both my neuro and my family physician are dismissive of the findings of the MRV and the Doppler. My neuro says they are "consistent" but he's "not sure it's pathologicial" or "significant." Like you, I seem to know more about CCSVI than they do--or even more than they are interested in learning.

I recall Dr. Scalafani's concerns about whining about neuros, but I think it's important we be able to share information so that we know we are not alone in dealing with that.

Cece, when is your procedure with Dr S? Keep up the good fight!
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Postby SaintLouis » Wed Jan 12, 2011 8:15 am

Cece, I feel your pain. It's like for a few moments as you listen to that extremely biased point of view coming from someone you trust and who is otherwise a very intelligent person you feel like you just fell down the rabbit hole and the world has gone mad.

Shake it off...just shake it off...assume his motives are good - he is concerned about you as a patient and is showing it in the best way he knows how. He does not (yet) realize how mis-informed many of his beliefs are. He lives and breaths neurology, his vascular knowledge is limited.
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Postby 1eye » Wed Jan 12, 2011 9:02 am

Always easy to recognize because of the wisdom of Shakespeare, this is definitely a case of "protesting too much."

It is not very respectable, and may cost some people a chunk. As I said, word of mouth in the captivity of a doctor's office is very effective, very dangerous, and uncommonly scurrilous.

As someone said, they are all reading the same notes, to make unison lying easier, just like bank robbers get their stories "straight" before testifying. It is very boring compared to the polyphony of truth.

They are digging a professional grave for themselves. Darwin and others have assured us the supply of 'MS' patients is inexhaustible.
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