Almost off topic: Radiologist and some thoughts

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

Almost off topic: Radiologist and some thoughts

Postby sou » Mon Jun 15, 2009 11:14 am

Hi all.

I feel a little down these days. I have gained some weight, 30 lbs, due to an antidepressant. I am a little confused, too. Not MS confusion, but rhetorical. Here are the facts:

Neurologists disgust me. I can think of no symptom they can really treat. Spasticity? Oscillopsia? Paralysis? Blurred vision?

How about diseases? What can they really cure, or at least help, without ruining the life of the patient?
MS? ALS? Alzheimer's? Parkinson's? Epillepsy? Spinal Cord Injuries? Cerebral palsy?

In my country we say for worthy people: "This man touches coal and turns it into gold!"

For neurologists I would say: "They touch gold and turn it into sh*t!". What to recall?

Spasticity / Can't walk -> Baclofen -> Still spasticity + weakness, but the super dooper wow scientific index decreased by 0.00012132 degrees! WOW!!!!! This is magic!

Depression -> Remeron -> Felt a little better till I realized that I gained 30 lbs, then felt the same. No effect.

MS -> Rebif -> No effect on MS! Felt like SH*T 24/7/365/4 years

MS -> Oh, take Noventrone (I didn't) -> Heart issues, leukemia, doubt it would work on my MS

Spasticity -> Physical therapy -> Too much pain, absolutely NO gain! And, of course, no money back warranty :-(

Apprentice wizardry. We don't know what MS is, but we are gonna give you drugs that will make you feel like sh*t and, of course, will not work at all! Why are they in love with strong drugs? Couldn't they prescribe safer ones? They would be equally ineffective, anyway.

Doctors should be only paid after they offer real help. They shouldn't if they fail. Would you pay for having your car fixed if they didn't fix it, not to say if they broke it down even worse. So, why should we pay doctors and not ask for compensation, instead?

I have found a radiologist that is wonderful. He is very interested in the whole CCVI thing. I had a dopler done, but it was not correct. We will do it again, because he didn't know what exactly to look for. Actually we did it because he had never examined the veins of the neck in his career and wanted to see if he can find them. We know know exactly what to look for.

He studied in Italy and he will be visiting Ferrara in September for a conference and will meet Dr Zamboni, too.

My conclusion: Doctors are corrupt by the power their God-like position gives them, but there are very few among them who are humans, too.

Thanks for listening.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby cheerleader » Mon Jun 15, 2009 11:55 am

Sou...
alot of people "feel your pain." Truly. It was hard for me to watch my vibrant and energetic husband change. I wish we had known about his venous problems years ago, but for whatever reason, now is the time.

We can't blame neurologists. It isn't their fault, and they have been doing what they can with their limited understanding. It is the fault of modern medicine and specialization. Neuros look at the brain, see demylination and diagnosis. Diagnose and adios, they used to call it. But now we have drugs that can change brain chemistry or mute the immune system. And that is what they use. They do not consider the body as a whole, because they look at the head, and stop there. When I asked Jeff's neuro why his blood was so thick, why his liver enzymes were so high, why he had no peripheral vision, why he looked jaundiced...she said "It has nothing to do with his MS." And that is why I began reading research online. Because I knew it was all connected.

You will get your answers eventually. Maybe try a different antidepressant, if the weight gain is a problem (Jeff tried a few before finding one that worked for him). Keep moving, go for walks, watch funny movies and read good books. Get sunshine on your body. Physical therapy will work.

I know you are a student....learn how to help others so they do not have to suffer needlessly. Become a doctor who can take a chunk of coal and make gold. Jung calls it alchemy. Believers call it a miracle. You and your radiologist friend can change things. Work together for good! Sounds like he is going to the big vascular conference on Sept 8 in Ferrara!!! That will be an exciting event. I hope to go, too. We'll see. As wobbly says, "Stay Strong! This is 4real!"
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Mon Jun 15, 2009 12:12 pm

............
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Postby skydog » Mon Jun 15, 2009 1:32 pm

Thank You Cheer You have a way with words that brings out the good in everyone. Keep the positive flowing... We are all listening. Hope has brought us this far and hope will carry us further. Some day soon we will look back from where we came and know it is you and sincere people like you that have kept us moving in the right direction. Hang in there Sou I feel your pain. Keep focused on the good that is coming our way soon. Yes stay strong Peace and Health Mark
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Postby mrhodes40 » Mon Jun 15, 2009 2:02 pm

Hi Sou,
I am so glad that you have a different way to go now. I am too. I am in the same place you are in terms of how I think. I think the problem is the medical world in general not the individual doctors. Specialization is a problem but so is how we fund research and the influence pharma has on the kind of research that gets done and how things are advanced.

Every doctor is busy and so likes to attend professional seminars set up for them by big pharmaceutical companies---the research discussed at these seminars are those that support the pharma drug's use. A paper on MMp9 and how it impacts immunity is in: one on how immune cells were not present in MS lesions is out. Thus the MD who just spent an entire week at a seminar has been educated only in the certain point of view, but he feels very up to date in the new research, and he also has a false impression that all of the research is looking autoimmune.

Unfortunately it is not scientific to pretend MS is autimmune when it is not shown to have a specific antigenic target that we can identify, and such facts are not discussed at these seminars.

Anyway we are of the same mind Sou and I think it comes to a person after some years in this game don't you? Many people who are only 4 or 5 years into their MS journey have not come to this mind yet. They seem to be doing pretty well and they believe it is the drugs they have been given and things are working. They are actively taught to think that MS would be uch worse without the help of the drugs they are on--but that is probably not at all correct......

CLICK HERE

Pretty interesting, those CRAB drugs look a little less wonderful with that as the natural course of MS don't they?

IT seems to take a few promises broken by the doctor in the form of new symptoms when the doctor told you your drugs are working, or a terrible side effect that he cannot help at all, before the patient becomes clear that the doctor does not have the answers after all.

I am so glad the ccsvi model has come along now. we have something new to look at and investigate....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Mon Jun 15, 2009 2:26 pm

...and I totally agree with Cheer that we can be positive and go forward bravely with all we have. This model is going to need all the supporters it can get. :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Mon Jun 15, 2009 4:58 pm

Marie wrote
Anyway we are of the same mind Sou and I think it comes to a person after some years in this game don't you? Many people who are only 4 or 5 years into their MS journey have not come to this mind yet. They seem to be doing pretty well and they believe it is the drugs they have been given and things are working. They are actively taught to think that MS would be uch worse without the help of the drugs they are on--but that is probably not at all correct......


"They seem to be doing pretty well". -- This would be me in 2004 - maybe I should go back and look at old TIMS posts. I was not taking drugs, and proud of it! I thought I was going to be that one person whose MS did not worsen. Thankfully, it has not progressed like so many on TIMS. Now I finally feel that I am in control of this disease thanks to my new stent.
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Postby Loobie » Mon Jun 15, 2009 5:32 pm

Sou,

I feel your pain. Ever since I started looking into this venous stuff I've had so many of those same thoughts; especially about the drugs. They are like dropping a cinder block to kill an ant. It just pisses you off when you pull back and look at it. I got my wake up when I switched neuros. My new one was like "you're on tysabri but you haven't tried another approved therapy?". I said "Oh, you mean those three that are the exact same thing at a different dose? Or is it the one that we don't really know why it works?". He really didn't have a shitty reaction because he is very intrigued by CCSVI and read Dr. Z's paper cover to cover and is supportive of that. I think he realized I saw throught the rote bullshit and he probably realized continuing to push that ideology would simply not work in my case.

Stay empowered with info. and keep your chin up. I want nothing more than for the venous theory to play out. It will be lots of fun to go strolling back into their office with improvement (knock on big wood) and simply say "you were saying?".
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Postby mrhodes40 » Mon Jun 15, 2009 6:23 pm

He really didn't have a shitty reaction because he is very intrigued by CCSVI and read Dr. Z's paper cover to cover and is supportive of that. I think he realized I saw throught the rote bullshit and he probably realized continuing to push that ideology would simply not work in my case.
Wow Lew good for you for holding your own. This whole disease would be different if we all were able to act like that, they'd stop treating us like children to be herded and more like the adults that we are who expect to be treated with respect and dignity...

....and who very reasonably expect to be at the LEAST not harmed by their darned theoretical approach.

From the abstract I posted above the average person with MS does not reach an EDSS of 3 until 17 years and 6 until 24 years.
at 20 years after onset less than 25% of RRMS patients had EDSS of > or = to 3


I know very few people who are doing that well ON these drugs...and that study was done in 04 and obviously included people who had not had much in the way of CRABS early on at all since the drugs came out in the mid 90's and they were talking about 10 and 20 year results.

I have great hope for this new model and hope it means those numbers go UP..............and 50 years after DX with good follow up we are doing well............ 8)
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Loobie » Tue Jun 16, 2009 4:42 am

That's really interesting from this angle; are the CRAB's causing less MRI identifiable MS 'stuff' but making us progress faster? You said won't get to 3 for how many years? 17? At the rate I've been going, 17 years and I'll be about an 8!! Seriously though, those numbers are so misleading since it just seems like there are more exceptions than rules. I also think it could be that there are lots of people dx'd with MS out there languishing in the high functioning lower EDSS levels that just don't come to places like this because they don't have time. I hate to say it because I love you all, but that would be me!

And I think the fact that there are so many exceptions kind of proves the fact that the research 'ain't over in terms of saying this disease is for sure autoimmune.
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Postby Needled » Tue Jun 16, 2009 8:17 am

Sou, I'm not in a good place with my (current) neuro either, so I get you. Good luck with your new radiologist. That sounds promising.
And I certainly agree with the comments on specialization -- how can they say it's not all connected? I never had problems with my back until I was diagnosed. Now my major sympton is spasticity in my legs, and my back aches like a b*tch every day. Everyone I've asked (with the exception of my massage therapist) says it's not connected. And whenever I tell them the NMSS definition of spasticity includes the lower back, I get the same denial. I don't understand why spasticity would decide to stop right at your legs and not continue up into your lower back. Not that there's much they could do for it anyway, but I just don't get the tunnel vision that most of the medical field seems to have developed.

And Cheer, what's this about:
the big vascular conference on Sept 8 in Ferrara!!! That will be an exciting event. I hope to go, too.

Is that an 25th anniversary present for you and Jeff? That's a great idea!
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Postby peekaboo » Tue Jun 16, 2009 8:21 am

Back to Sou -

I gained 25#'s but i attribute the fact to my lack of exercise/activity not the antidepressant that i have been taking. I'm losing muscle as well. But enough about me.

You are on the right track with your radiologist. trained in Italy and knows of Zamboni...he has an inquiring mind so he is willing to work w/you even w/ trial and error.

There is silverlinings in them darn clouds up there. :P
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Postby chrishasms » Tue Jun 16, 2009 8:35 am

123
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Postby cheerleader » Tue Jun 16, 2009 8:59 am

Stenosis means "narrowing", Chris. A stenosis is a blockage. Picture if you twist a hose or step on it or put a kink in it, the water can't get thru. Pressure from the outside stops the flow. Same thing here...there are no "clots". Every MS patient tested has stenosis in their jugulars or azygos veins. What is different in each patient is the amount or percentage of "occlusion"- or closure, how many stenosis, and where they are located.

Jeff, Sharon, Marie and Holly had 90-99% occlusion (blockage) in their left jugular veins. That means there was only 1-9% left open. Jeff and Marie also had occlusion of their right jugular- at 80%. Jeff, Marie and Sharon have had MS for longer than your neighbor....but their lesions are all cervical spine and above.

Holly had stenosis in her azygos vein as well as her left jugular, and she has spinal lesions. Holly was diagnosed primary progressive about 8 years ago. Dr. Zamboni found that patients with azygos blockage had PPMS. Your Dad's neighbor probably has multiple places of vein closure in her azygos vein, since it's moving so quickly. The spine is much less able to reroute than the brain. I'm really hoping that the stent placed in Holly's azygos stops the damage to her spine, and allows for healing...we'll know more when she gets her next MRI.
Hope this explanation makes sense.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Tue Jun 16, 2009 11:26 am

123
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