CCSVI: Rant about neurologists

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

CCSVI: Rant about neurologists

Postby LadyDoe » Sun Jul 25, 2010 8:36 pm

I am sooooo angry with neurologists right about now, well, specifically MY one(s). My initial neurologist - who i am still seeing - called me a "damn hippy" for following the Swank Diet for starters. Then simply brushed off CCSVI cause "vascular surgeons are not neurologists" yet he was not impressed with my response "neurologists are not vascular surgeons". It's annoying that interventional radiologists/vascular surgeons are not degrading the neurology community, however, neurologists seem to think it is their RIGHT to degrade their field.

Anyway, continuing on. I decided to get a second opinion about CCSVI by another neurologist - he saw my doppler scan which clearly states "50% stenosis" and said "before you continue, let me tell you, DRUGS ARE THE ONLY WAY!". I asked how he can say that with such certainty and pride, when drugs have shown to do SQUAT when compared to the effects of liberation. I even handed him a study which concludes that interferons DO NOT WORK! He said "until there is a double blinded random controlled study, i want no part of it". Then i decided to ask which pharmaceutical company he is being shagged by before he kicked me out of his office. Refusal to pay and constant emailing (15+ per day - may as well solidify his opinion that i am nuts) - he dropped the $300 charge to get me out of his life LOL

My theory is, this procedure has them panicking within their little narrow minded, text book community. They are putting on a hardened exterior, when the truth is that they KNOW that drugs will eventually be phased out. Little do they know, I am about to begin a job as a pharmaceutical sales rep in the coming weeks, so I will KNOW how much they get paid to prescribe medication to sufferers like us! Oh and as a friend of a person high up in an australian pharma company - i know that bribes are rampant.

Anyway, I say, WE'RE paying them to do us little service - the least they can do is LISTEN to us. I mean, if they had MS, of course it'll be different! Truth of the matter is that they cannot explain why people are improving after liberation procedures because they dont want to credit another field of medicine. It is as if they are so greedily territorial that they are content with ignoring the fact that people are improving over their own pride. In my opinion, neurology is a SHAM field, like a pseudoscience when it comes to MS pathology. I hope they begin to feel inferior to intervential radiology! Cause THEY really do care about us, not about money!!!

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Postby selkie » Sun Jul 25, 2010 8:57 pm

Geez, I was just going to post something very similar - kudos to you for standing up to your neurologists.

I live in the US & my HMO has me by the t*ts because there's only ONE neurologist in their medical plan and that one refuses to read any info on CCSVI that I've given him, refused to watch the Zamboni interview on CTV, refused to read articles about LDN, and told me dismissively regarding CCSVI (which he got from another neuro whose wife died from MS so no wonder he doesn't want to find out there MIGHT have been a way to SAVE her): "Nothing much will come of it."

He won't refer me to a local IR who is supposed to be very good, and this IR has no direct patient contact so I have to have a referral so the whole medical system is just a bunch of Catch-22s All Over The Place.

So, this is just one of thousands of such stories, and I know many of us are trying to educate, trying to find somewhere that WILL treat us, but in the meantime until we can get tested and treated:

HOW DO WE DEAL WITH OUR ANGER?

I know that stress aggravates MS symptoms, and I just read at the new CCSVI alliance org, where Dr. Haacke has a short video, that stress aggravates CCSVI!!

So how do we deal with the stress of being dismissed over and over, of having to be secretive about our IRs if we do find one, of having no one to turn to for medical advice, and of having no idea when & if we'll be tested and how many thousands of dollars that's going to cost & if we can afford it??????

How do we deal?
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Postby orion98665 » Mon Jul 26, 2010 12:34 am

selkie wrote:Geez,
HOW DO WE DEAL WITH OUR ANGER?

I know that stress aggravates MS symptoms, and I just read at the new CCSVI alliance org, where Dr. Haacke has a short video, that stress aggravates CCSVI!!

So how do we deal with the stress of being dismissed over and over, of having to be secretive about our IRs if we do find one, of having no one to turn to for medical advice, and of having no idea when & if we'll be tested and how many thousands of dollars that's going to cost & if we can afford it??????

How do we deal?


"Wow" Selkie its interesting how you mention about stress. My wife just diagnosed with RRMS was going through a very stressful time in her life.
After finding out her mother was diagnosed with an aggressive form of breast cancer is when she had her first episode of optical neuritis.

I find this thread very interesting. When wife was first diagnosed with
MS is when I started doing my research and came across this site (prior
to visiting the neurologist). I ended up asking the neuro lots of questions
including the swank diet and CCSVI. His reply: " Swank diet is too strict
and isn't proven to be effective." And when I asked him about CCSVI
as another form of MS treatment along with CRAB drugs. His reply:
"Don't bet on it!" Oh, and then he said I should only get my resources from the MSS web site. Hmmm go figure!:roll:
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Postby selkie » Mon Jul 26, 2010 1:26 am

Orion, I find it really interesting the connection between stress & MS - and reading the website for the new CCSVI alliance, stress is mentioned in association with CCSVI.

While many people feel stress often brings on MS symptoms, I had an experience with the onset of my MS connected with stress.

While I do think I already had the lesions, and I can think of two prior events in my life where I may have been having MS episodes that were misdiagnosed and then went into remission, I didn't get full blown MS until two weeks after a very stressful eye surgery in which I could have gone blind.

There were several other stressors prior to that, deaths in the family the most traumatic, and I can't help but think stress can sometimes, not always, trigger the auto-immune reaction - in combination with the CCSVI theory of a build up of iron in the brain and insufficient blood drainage, I do think stress can be a trigger, the last straw so to speak.

That's why I think it's important we MSers learn how to cope better with strong feelings - which is difficult when we're presented with such hope that Liberation treatment offers, yet are denied that treatment in our own countries. And then dealing with all the resistant doctors.

Coping presents a challenge as we have to stay strong thru the struggle.
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Postby BooBear » Mon Jul 26, 2010 5:22 am

Gang, here is what I did to cope with my anger. I became one very determined b*tch. :)

1. I tell anyone that will listen to me about CCSVI. I direct them to all the sites and encourage them to review the information and come to their own conclusions.

2. I purchased two large car magnets that encourage people to seek out information on CCSVI and the Liberation Treatment for MS. This weekend I had a great conversation with one woman (see my post on "Getting the word out!")- I hope that others read the magnets, jot down the info and do their own research as well.

3. I took matters into my own hands. My neuro told me two people died from the Liberation treatment (false). One IR I visited knew nothing about it- I left him several research papers. I got on the waiting list for Albany. Don't let anyone stand in your way.

4. I help anyone that I can with information, information, information.
Their neuros won't help them- so I will.

5. I informed my GP (who was FAR more open) and he decided to learn more. He can refer patients- that's where those conversations are worthwhile.

6. I ceased donations to the MS Society. When they help us, I will help them.

7. I plan on donating to the CCSVI Alliance.

In my experience, the best way to manage anger is with action. Take control and let the frustration serve as fuel to push you even harder. You will be amazed how much you accomplish!!!
Three veins angioplastied.  One renewed life.  
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Postby BadCopy » Mon Jul 26, 2010 5:50 am

I also found that stopping my donation to the NMSS felt really good. Like boo said "when they help me I'll help them". I have helped with the walk and 150 enough anyway.

The other thing that really helped me was mailing out about 125 letters to IRs in my home state. I feel like I am paying it forward to help everyone with this disease. Even if it only gets one more Dr involved (and it has gotten 1 involved already) that is 1 more than yesterday.

The next thing I have to do is leave a msg for my current Neuro letting him know that my APPT is next month and I need to know if he still will see me after that. Because if not I will be making a lot of calls to find one that will.
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Postby MS_HOPE » Mon Jul 26, 2010 10:13 am

LadyDoe, I share your outrage, and hope you can channel it into something helpful for you. There's no doubt about the stress link (my MS turned progressive during my 8-yr-old's 3-month hospitalization for a bone marrow transplant). I hope just the ability to vent here, and know that others share your anger, helps a little. I find that activism helps, but I know I'm lucky to have the energy and time to do that.

BooBear, you rock. I stopped seeing neurologists five years ago, but I was fortunate to have found non-drug approaches that helped me. I've sent copies of Dr. Sclafani's Endovascular Today article to area neurologists and IRs, and will do the same for the heads of local university hospitals, heads of IR, neurology, etc. I told a local IR about Dr. Sclafani's symposium, and he immediately signed up for it. (He was already onto CCSVI, fortunately.) I'm attending NMSS- and drug-company-sponsored local functions and bringing up CCSVI (they don't!), prepared with info to give interested MSers. A simple business card with website links to CCSVI Alliance, Dr. Sclafani's article, this forum, and "CCSVI in MS" Facebook page can open the door for people. We can't force them to walk through, but we can at least show them where the door is.

Hang in there, everyone. I find one way to deal with the anger is to come to this forum, where we can at least find others on the same wavelength. But there's no getting around how outrageous this situation presently is. Let's keep working towards CCSVI treatment for all MS patients who choose it. Changes to the status quo take time, but we can help reduce that time. Look at what a difference Joan's and others' activism has already made.
CCSVI:  Making Sense of MS
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Postby ccsviadvocate » Mon Jul 26, 2010 11:01 am

Hi, I just wanted to take a moment and agree that most neurologists are very bad when it comes to thinking outside of the box. Every neurologist that my husband has been to has been about pushing the medications and interferon's.

Each interferon that my husband tried in fact made his M.S worse but they still keep pushing them and trying to get him back on them. Our wonderful G.P was smart enough to take him off them. In fact my husband refuses to go to a neurologist any more as they all spout the same pharma jargon.

Our local G.P is our main support and he has been wonderful. Whenever we have found something new he has read the information we have brought to him and kept an open mind, which is key.

When we brought CCSVI to his attention he was dubious but has read all of the literature and gone on websites that we sent to him. He is now encouraging my husband to get the procedure. His words were that it was controversial but that my husband had nothing to lose and everything to gain. He is a U.S Doctor but is Canadian and refuses to meet with Reps from drug companies. What a refreshing change!

So the gist of all of this is if you get no support from your neurologist then do what we did and try your G.P.
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Postby selkie » Mon Jul 26, 2010 11:11 am

Hello everyone,

I love these suggestions. I've been feeling like a helpless rabbit these past few months.

Now I'd love to do what some of you suggested, first, to send letters and articles to local IRs and vascular doctors (the neurologists in my state are hopeless).

Does anyone have a letter they'd like to share that they wrote to local IRs so I don't have to reinvent the wheel? I do have several bookmarks to important pages as far as articles, so I can print out a few of those to send with the cover letter.

But if anyone wants to post those as well for other people who want to start taking action, please do.

One thing I want to include is info about today's symposium in New York, so it may be a good idea to wait a few days and see if some gives us a transcript or notes to that symposium.

We know that time is of the essence, and I'm sure that's why many of us feel frustrated. The sooner we can get tested and treated, the greater chances for better improvement.

My MS brain is so foggy, writing is difficult for me to organize my thoughts about ccsvi, so if anyone has a letter they've written to doctors, I'd love to see a link or a copy. (either here or PM if you'd prefer)

Thank you all for your fantastic ideas about how to channel frustration into action.

(and yes, I'd already stopped contributing to the NMSS but I need to write them a letter to to let them know WHY!)
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Postby MrSuccess » Mon Jul 26, 2010 11:26 am

please take note : the first guest speaker at Dr. Scalifani's gathering is
Dr. Salvi who is a neurologist and is Dr. Zamboni's main partner in the Liberation discovery.

The Buffalo study is being conducted by Dr. Zivadinov and Dr. Weinstock-Guttman .... BOTH .... neurologists.

May I suggest that each person - neurologist - be evaluated on a individual basis . :idea: ........ Not as a group .....

I am all too familiar with the experiences that pwMS report here at TIMS that they have with their neurologists. Some .....very bad. :evil:

Better to focus and promote the more open minded neurologists. :idea:





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Postby dlb » Mon Jul 26, 2010 11:54 am

selkie wrote:
I know that stress aggravates MS symptoms, and I just read at the new CCSVI alliance org, where Dr. Haacke has a short video, that stress aggravates CCSVI!!



I definitely know that stress affects me and have always felt that some stress I was undergoing shortly before my dx was a contributing factor. Now that we have a connection to CCSVI, it all makes sense. CCSVI is vascular and when you think about it.... other vascular conditions are affected by stress too - think about strokes.

Something just came to me recently as I think about CCSVI and my family history of MS. I have a lot of family members on my father's side with MS. My paternal grandmother had strokes in her lifetime and became quite disabled because of her strokes. My father had a stroke about 6 years ago. It just hit me the other day that the issue within the family is vascular and maybe it affects members of the family in many ways??? In any case, I can certainly see that the statement "stress aggravates CCSVI" makes sense!
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Postby selkie » Mon Jul 26, 2010 12:25 pm

dlb wrote:
selkie wrote:
I know that stress aggravates MS symptoms, and I just read at the new CCSVI alliance org, where Dr. Haacke has a short video, that stress aggravates CCSVI!!



I definitely know that stress affects me and have always felt that some stress I was undergoing shortly before my dx was a contributing factor. Now that we have a connection to CCSVI, it all makes sense. CCSVI is vascular and when you think about it.... other vascular conditions are affected by stress too - think about strokes.

Something just came to me recently as I think about CCSVI and my family history of MS. I have a lot of family members on my father's side with MS. My paternal grandmother had strokes in her lifetime and became quite disabled because of her strokes. My father had a stroke about 6 years ago. It just hit me the other day that the issue within the family is vascular and maybe it affects members of the family in many ways??? In any case, I can certainly see that the statement "stress aggravates CCSVI" makes sense!


I also have a family history of strokes (and heart attacks) - it does make sense.

Have you seen the CCSVI alliance page? (new) There's a section for how to promote endolethial (sp?) health - this is at least something we can do until we find a doctor who will perform the CCSVI procedure.

Viva liberacion!

Stay strong in the struggle.
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Postby L » Mon Jul 26, 2010 12:58 pm

Perhaps they get so used to being unnecessary that they can't process the information! Alzheimer's -no cure. MS - no cure, spinal cord injury - no cure. The list goes on and on and on. It must be quite a depressing job and it surprises me that they are so unenthusiastic over the first thing that offers hope to anyone, ever, in the field of neurology.
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neuro's

Postby blossom » Mon Jul 26, 2010 2:04 pm

i have to say that with 20 yrs. of dealing with ms the very first neuro. i had was very good even treated me like he did care and was never rude. i liked him but he never was able to help me. but the next 18 yrs. i did not come across 1 that i picked up on that really gave a s--t. plus everyone of them really needed a real ATTITUDE ADJUSTMENT. i am glad to see there are some neuro.'s getting in on ccsvi. this ccsvi-ms puzzle does need them. these neuo.'s are the kind that they all should be. open minded, wanting to truly help their patients. so, all neuro.'s are not bad but the really good ones are far and in beween.
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Postby LadyDoe » Tue Jul 27, 2010 5:58 am

wow i didnt realise this thread would receive such an overwhelming response.

I am quite proactive in getting the CCSVI word out. even my GP offered to refer me to an IR before i had even asked! i think he's a keeper. He did say the government has put a lot of red tape over the medical field, so its quite difficult doctors to achieve what they have, however in some cases could be at the cost of their licence.

I think I will also join in on the CCSVI car sticker idea! it's absolutely brilliant. I am also in the process of printing CCSVI/vascular journals -through my university library access - and binding them to send to IR's in Melbourne.

Neurologists really do live up to the definition of community - A body of people having common rights, privileges, or interests - yes, that's right, interests. Interests that i can think of are... being greedy, relative annoying, heartless, oh and not to forget, PSEUDO-DOCTORS (fake).

Hey, i thought doctors must swear by the hippocratic oath - "to abstain from doing harm". Sounds like the dollar signs rolling in their eye sockets have possessed them! All good, WE WILL have the last laugh! Mouahaha
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