This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear TIMS,

I just want to vent a bit and perhaps get your individual feedback, if you share the same 'type' of experience as me.

I switched neurologists from Dr. F* (for very obvious reasons, as I was unable to deal with his 'God Complex').

The neurologist I have now is much more personable and understanding. However, everytime I visit him, I leave his office feeling so sad and down on the future of CCSVI. He always makes me feel as if it is just a random phenomenon and that all the patients he has that have done the procedure, have not really improved that much! Furthermore, that the decrease is vein width is due to age and the progression of the disease...which thus makes us MSers, less reliant on our jugular/other veins.

Then the conversation always switches to new drugs on the market and how CCSVI is so risky. He does not seem like a 'conspirator' against CCSVI, just so skeptical, even though he has had lengthy coversations with Dr. Zamboni and other CCSVI champions.

I just feel totally deflated and that the only real goal of the various IR's is to make $$.

So confusing

Don’t despair.

Usually neurologists are neurologists because they couldn’t get into the specialty of their choice. So now here they are stuck in a profession not of their choosing, having to deal all day mainly with incurable untreatable atrocious diseases of which MS is actually one of the better. They are bound to be less than enthusiastic about an MS treatment that comes to them outside their field and claims that most of what they learned in medical school about MS and explained to patients all these years was based on an erroneous (silly) theory. That’s bound to smart. So have some sympathy for these sad and lonely individuals and try to cheer them up as best you can when you see them. Telling them about CCSVI and how much better you are doing after being treated definitely won't help.

It's kind of like rubbing salt in their wounds.

This was my left jugular:

The first image is before angioplasty. You can see where it is blocked near the bottom, with only two trickles getting through? I do not think your neurologist could look at this image and say that is a decrease in vein width due to age or MS progression. It was a bad valve, and it was treatable.

Your neurologist sounds like he is well-intentioned but skeptical, and that isn't bad. There will be more research coming in. Rather than take his word for how patients are doing after CCSVI venoplasty, we'll see in the research how the patients did. We need science, rather than anecdotes, whether it's the neurologists' anecdotes or our own! My neurologist told me that of his patients who had improvements, the improvements were gone in three months. That hasn't been the case for me, but he's not telling other patients my success story.

It is frustrating.
Every doctor should live in a patient whose "MS" has progressed to the point where they are a paraplegic, for a minimum of ONE month. Or maybe they should have their veins surgical blocked and see if their f....ing collaterals are enough!
And then have angioplasty and see the difference.

I think its a waste of time talking to most neurolgists about CCSVI. Don't expect them to be truthful and forthcoming (intentionally or not) on how their other patients have done with treatment. You are far better off seeing physiotherapists who are much more open-minded about the issue. They are also better-equiped to perform a battery of objective physical and neurological measurements to gauge whether you have actually improved or not (as opposed to the perfunctory, subjective, eye-ball-it, going-off-memory-here tests the neurologists like to perform). Physiotherapists are thrilled if you have an improvement and supportive if you do not. And, unlike neurologists, they actually have useful advice to impart about things that you can do to capitalize on any improvement that you do have.

.

On the contrary. I think neurologists are highly intelligent and capable individuals who are simply victims of their education and training in some respects when it comes to CCSVI and MS. Physiotherapists take physiotherapy to become physiotherapists. Most doctors go to medical school without being sure what specialty they might be – if any. Neurology in most cases only requires only three years of residency – one more than a standard family doctor, and is a fall back position for many if they don’t get into any of the other specialties. IR’s need four years of radiology and then an additional two to operate on veins and such. Based on this, I think you'll find a higher percentage of neurologists picked something else as their first choice - not that there is anything wrong with that!

I don't know about yours, but all of my neurologists (3 so far) had one thing in common:

Whatever they said, MS cause, prognosis or advice, has proven 100% wrong with mathematical accuracy, I would say. There are times that I want to ask them 43 numbers from 1 to 49 so that I play the rest 6 and win the lottery. This is not funny. It has happened the opposite of everything they have said...

To err is human, but you have to be a neurologist in order to always err with such an accuracy.

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

As Dr. Dake has said, this is all lunacy to neurologists. Most of their peer-reviewed and published studies have not found CCSVI related to MS...with the exception of those who worked with Dr. Zamboni and utilized his protocol (Zivadinov and Fox)-- So, your neuro's response is not surprising, hargarah.

Jeff's neuro is happy to see him doing so well-he's going on 3 years since intitial venoplasty, with no MS progression or relapses, reversal of gray matter atrophy on MRI and major symptom relief. But she still thinks the whole CCSVI theory is not valid, and in all honesty, I can understand why.

I suppose we have to look to young neurology researchers, like Case Western student Claudiu Diaconu, for a change in paradigm. He's been working with Dr. Fox--and he initiated the NMSS funded study that harvested jugular veins from autopsies in pwMS and normals and found venous malformations in the jugular veins of those with MS. And he's been working on practicing the Zamboni doppler protocol and is finding CCSVI in living patients. Here's a note I wrote up, thanking him--
https://www.facebook.com/note.php?note_ ... 5965972211
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

..... and in all honesty ... I can see why .

Are you refering to J's neuro's opinion ..... or your's ?


By the way ..... here are some questions to ask your Neuro .....


Does my heart pump blood up my neck and into my brain ? Y / N

If these pathway's of blood .... become blocked ....will I suffer a stroke ? Y / N

If these pathway's of blood .... become blocked .... will I die ? Y / N

How does blood pumped into my head ...... get back out ?

Can blood flow INTO the brain and blood flow OUT of the brain , be measured ? Y /N

Should the flow rate and pressure be equal ? Y / N

Can I have this done ? Y / N How can you decide this WITHOUT testing me ?


Get their answers in writing . Take the paper to your lawyer. It'll come in handy when you Sue ...... for not taking action sooner than later ...... when early treatment would have helped.

They fiddle ........ as Rome burns.



Mr.Success

My neuro's advice in the previous years:

You don't need antioxidants or other supplements. (poor endothelium...)
Diets in MS are a joke. (nope, but I don't want to talk about blood's rheological properties)
MS is definitely autoimmune. (nope!)
The CSF flow has nothing to do with MS (after having found old research stating such an anomaly, proven today )
If you don't take Ty you will be confined in wheelchair 24/7 in 2 years. (still walking with the exact same difficulty as then, wheelchair for long distance only)
You will be fine! (I am not)
You shouldn't eat chocolate. (What? Aren't diets a joke? By the way, it contains polyphenols, but I prefer taking the from other sources)
MS will be cured in 5 years. (LOL! 15 have almost passed!)
You don't need to exercise. (Reaaaaallly???????)
Sunlight has nothing to do with MS. (Better eat instead of talking...)
Zamboni's work will prove a joke in 2 years! (3 have already passed and it is less a joke than ever...)

That's some of what I ahve heard so far. It is very hard for me. I need a neurologist to asses my progress (->worsening) and discuss research with him/her but I can 't find anyone that I can trust. How can I trust such a misinformed person? And what kind of service could he/she offer to me and his patients?

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

too late RL ... I've read your deleted post. you're a strange one.

back on subject ..... everytime I leave my Neurologists office .....

I think it's perfectly OK to post your experiences and thoughts on your Neurologist.

Say anything and everything ... EXCEPT .... that person's name. What you report is very helpful to others. How to react. What to say. What to ask .

I really do wish this " paint them all with the same tar brush " anti-Neurologist rant would please stop. If I have to post all of the names of the HELPFUL NEUROLOGISTS that seem to be SUPPORTING the concept of CCSVI >>> MS ....... well .... I guess I'll have to.

Maybe it's better the Neuro Haters ..... discover those wonderful supportive medical professionals names .... by doing some reading. It's all here on TIMS to find.

Or .... you can save some time ........ and just trust me on this ........ there ARE many Neurologists ...... names we know ....... and many working under the CCSVI radar.

It will be like a highschool dance ...... at first .... only a few cool confident people ... with the whole floor to themselves .... then slowly ....... others join in the fun. And before the night is finished ...... packed.

Remember : The second mouse alway's get's the cheese ..........



Mr.Success

My opinion of the neurologists I have seen is mixed but I have some definite issues with them. One told me that he suspected MS two years before my Dx & should have goltten me a brain scan but didn't & the other told me that CCSVI treatment was only a big money grab.

My answer to them should have been:

Two neurologists are hot air ballooning when clouds come up and they realize they're lost. They go lower, and suddenly the clouds part and they see that they're passing over a field where a man is on a tractor.

One of the neurologists leans out and yells, "Hey! Where are we?"

The man on the tractor looks up and shouts back, "In a balloon!"

Then the clouds swallow them up again. The first neurologist smiles. "This has been a great day! We saw good scenery, we put back some brewskies, and now to make the day complete, the first guy we meet is a neurologist too."

"Wait a minute!" interjects his friend. "That looked like a farmer to me. What makes you say he's a neurologist?"

"Well, think about how he answered our question. He gave us precise localization and it didn't help a bit."

That is too cute and too true.

"I've never been so embarrassed to be a neurologist. We're supposed is be the smart ones.'

Dr. David Hubbard