burning building

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

burning building

Postby Cece » Thu Dec 30, 2010 8:43 pm

http://ccsvi-ms.ning.com/profiles/blogs ... g-building

"You are my family, and MS is like a burning building in which many people are trapped and screaming for help. Somehow, some of us got out, and we fell on the ground outside the building with varying degrees of injuries. We know that we still have brothers and sisters inside the building, so those of us who are able are doing everything we can to get help to those are still inside. The more people we get out of that building, the more help we have to get the others out. Please stay strong. We have not forgotten you."
- Kathleen Lynch
Cece
Family Elder
 
Posts: 9044
Joined: Mon Jan 04, 2010 3:00 pm

Advertisement

Postby VeeBee » Thu Dec 30, 2010 9:09 pm

Dr. Tariq Sinan will love that.

Clap, clap, kathy. You should be in for a raise. Please dont mention burning buildings, raw subject & most docs dont have a clue.
User avatar
VeeBee
Family Member
 
Posts: 42
Joined: Tue Apr 06, 2010 2:00 pm

Postby eric593 » Thu Dec 30, 2010 9:44 pm

Does anyone know why she didn't go back to Dr. Sinan for her 2nd procedure? Was there a parting of their commercial interests along the way, I wonder?
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 3:00 pm

Postby David1949 » Fri Dec 31, 2010 7:59 am

VeeBee and eric593
You both make some very serious accusations. Perhaps you should have some proof before you make such slanderous charges... or at least maybe you should have a good lawyer.

What would you two suggest MSers do?
Should we take the DMDs that offer no hope of recovery and bring a host of nasty side effects, and cost far more than Liberation?
Or should we just shut up and die?

Are either of you afflicted with MS? Or are you disgruntled neurologists? Or do you just enjoy bringing misery to sick people who only want to get better. Maybe you like torturing small animals too.

BTW Kathleen has been a huge inspiration to those of us who suffer from MS. Her mother was killed by MS and she could face the same fate. She is now in the battle of her life to get her life back. She does not deserve to be attacked by you two creeps.
David1949
Family Elder
 
Posts: 645
Joined: Mon Aug 23, 2010 2:00 pm

Postby L » Fri Dec 31, 2010 9:09 am

Kathleen said in a youtube video that she turned down the offer of being a paid representative for Dr Tariq, she wanted to remain an unpaid representative. You can email her for advice but I'm not sure how much administration and organisation she is doing these days.

But I don't see any reason, when she says that she isn't accepting payment, not to believe her.

http://www.youtube.com/watch?v=MBA3fISVdqk
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 2:00 pm
Location: The United Kingdom

Postby Cece » Fri Dec 31, 2010 9:30 am

I posted it because to me it was inspiring, please feel free to pass it by if it is not to you.

L, thanks for clearing that up.

More to the point of what she was saying, I know we were able to estimate in MarkW's thread that about 3000 people worldwide have been treated. Just an estimate.

Compare that with the figure that there are 500,000 people in the US living with MS.

2.5 million worldwide.

How many years will this take, even once this is proven which itself will take 5 -10 years, before all 500,000 are treated? All 2.5 million? Who is not going to get treatment even once this becomes standard-of-care, because they don't have the money or the insurance for it? Or the line is five years long?

There are so many people stuck and no way to save them all, not at this present time.
Cece
Family Elder
 
Posts: 9044
Joined: Mon Jan 04, 2010 3:00 pm

Postby vivavie » Fri Dec 31, 2010 11:16 am

eric593 wrote:Does anyone know why she didn't go back to Dr. Sinan for her 2nd procedure? Was there a parting of their commercial interests along the way, I wonder?


Maybe it's only because it is better to be treated close to home! Easier follow up, no flight, cheaper... When she 1st went to Dr Sinan there was not many other option available and HE was the most experienced then.

eric, I don't know if you are going through a rough patch but most if not all your recent posts are rude. Ever think about the person on the other side receiving your attacks???
User avatar
vivavie
Family Elder
 
Posts: 171
Joined: Wed May 05, 2010 2:00 pm
Location: QC, Canada

Postby 1eye » Fri Dec 31, 2010 11:24 am

Mixing the metaphors: I liken this to an airplane whose oxygen masks have deployed. The ones who should be first in line are the ones who can help the rest. That's why MSLiberation's predicament was/is so frustrating. She worked as tirelessly as a pwMS can, and then was abandoned by local doctors.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2970
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Postby eric593 » Fri Dec 31, 2010 1:32 pm

David1949 wrote:VeeBee and eric593
You both make some very serious accusations. Perhaps you should have some proof before you make such slanderous charges... or at least maybe you should have a good lawyer.

What would you two suggest MSers do?
Should we take the DMDs that offer no hope of recovery and bring a host of nasty side effects, and cost far more than Liberation?
Or should we just shut up and die?

Are either of you afflicted with MS? Or are you disgruntled neurologists? Or do you just enjoy bringing misery to sick people who only want to get better. Maybe you like torturing small animals too.

BTW Kathleen has been a huge inspiration to those of us who suffer from MS. Her mother was killed by MS and she could face the same fate. She is now in the battle of her life to get her life back. She does not deserve to be attacked by you two creeps.


Perception can sure differ between people!

You would have to think that medical tourism was wrong to infer anything negative in what I wrote. I don't.

I think wondering why she didn't return to the doctor she has been promoting (I believe she is involved with the CCSVI Egypt FB page, accompanying other patients to Egypt, she's posted pictures of observing the doctor's procedures and other photos with him) is a valid question. She has certainly been involved with Dr. Sinan's Egypt practice.

If there are concerns/questions about doctors here, we should be able to bring them up since this is a patient-oriented forum? Why were my questions taken as critical of anyone? For some reason, honest questions are taken out of context.

Two creeps...Maybe you like torturing small animals too.


THIS is somehow more appropriate than questions about why a person didn't return to her original doctor that she spent a lot of time working towards his practice?

I don't see how an on-topic question can be construed as critical of anyone - it is a QUESTION, not even a statement or opinion (which we should be entitled to offer anyway).

Why such sensitivities? It makes me suspicious that no one can get a full, honest story here if people feel the need to "protect" those of whom questions are asked about. If people have put it "out there", we should be able to ask questions about it or offer an opinion. It makes me wonder what is being hidden when people are so defensive about questions relating to why a patient who has a special relationship with a doctor decides to "scrape together" money in order to go to a different doctor she doesn't have a relationship with.

She has publicized her relationship with Dr. Sinan - why is it not appropriate to discuss it publicly then?
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 3:00 pm

Postby eric593 » Fri Dec 31, 2010 2:40 pm

vivavie wrote:
eric593 wrote:Does anyone know why she didn't go back to Dr. Sinan for her 2nd procedure? Was there a parting of their commercial interests along the way, I wonder?


Maybe it's only because it is better to be treated close to home! Easier follow up, no flight, cheaper... When she 1st went to Dr Sinan there was not many other option available and HE was the most experienced then.

eric, I don't know if you are going through a rough patch but most if not all your recent posts are rude. Ever think about the person on the other side receiving your attacks???


You may consider my remarks "attacks". I don't. You may follow my posts with your own about how "rude" you think I am.

I have never made a comment or opinion unrelated to the topic or that is a personal attack on someone.

I'm sorry vivavie, but I find it excessive (not to mention dangerous) for someone to have FIVE endovascular procedures in such a short period of time. I think it is the kind of example that the anti-CCSVI camp will use to show that we are not making rational decisions but will run back again and again at whatever cost no matter what the risks or lack of results. IMO, it doesn't help our cause.

I had a doctor mention to me about a patient who kept running around for repeated treatments. It was used as an example of what kind of patient NOT to be. After reading what you wrote, I wonder if that patient was you.

You may disagree with my opinion, but that doesn't mean I am "wrong", it just means you feel differently than I do. I am okay with that. I hope you will be okay with me not agreeing with you. It doesn't mean that I am not allowed to voice my opinion just because you disagree with it, you are not the absolute determiner of what opinion should be allowed here and what should be restricted. By posting, you invite all comments, not just the comments you support or that support you.

I am only replying because you seem so insistent on following me around and criticizing my opinions. But I will again return to posting on the subject matter of CCSVI-related posts as I am not really interested in spending my time debating what others think of my opinions, I accept that we are all entitled to our opinions and others may feel differently than me. I enjoy that, the diversity of opinion on CCSVI be it Lyon, scorpion, Cece, you or CCSVIhusband or Happy Poet.

I take to heart the "rules" here that recommend we state our opinion but not obsess over repeatedly forcing it on other people by counter-arguing over and over again. I don't need to repeatedly argue with you once I've made a comment here. I am sorry you feel I am "rude". I respect your right to feel that way. Thank you for sharing your opinion, I understand how you feel now.
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 3:00 pm

Postby Brainteaser » Fri Dec 31, 2010 6:36 pm

Eric - I think you may have asked the wrong question, sport.
It is perhaps less important as to who she went to for a second procedure than the fact that she needed one at all. Why? - We have been informed that by using bigger balloons and longer ballooning times, Dr Sinan has much lower restenosis rates. Is there anything we need to know?
User avatar
Brainteaser
Family Elder
 
Posts: 435
Joined: Fri Jan 14, 2005 3:00 pm
Location: Melbourne, Australia

Re: burning building

Postby NHE » Sat Jan 01, 2011 3:24 am

I have met Kathleen. She seemed like a sincere person who wishes to help people find relief from MS.

Brainteaser, thanks for sharing your thoughts. I like your question much better. When I met Kathleen last summer, she stated that she was doing much better and had experienced significant improvements in several symptoms. Until this thread, I was unaware that this had changed.

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3398
Joined: Sat Nov 20, 2004 3:00 pm

Re: burning building

Postby HappyPoet » Sat Jan 01, 2011 6:43 am

NHE wrote:I have met Kathleen. She seemed like a sincere person who wishes to help people find relief from MS.

Brainteaser, thanks for sharing your thoughts. I like your question much better. When I met Kathleen last summer, she stated that she was doing much better and had experienced significant improvements in several symptoms. Until this thread, I was unaware that this had changed.

NHE

NHE,
Thank you for adding your perspective -- it's one I trust and respect.
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 2:00 pm

Postby vivavie » Sat Jan 01, 2011 9:42 am

eric593 wrote:I'm sorry vivavie, but I find it excessive (not to mention dangerous) for someone to have FIVE endovascular procedures in such a short period of time. I think it is the kind of example that the anti-CCSVI camp will use to show that we are not making rational decisions but will run back again and again at whatever cost no matter what the risks or lack of results. IMO, it doesn't help our cause.

I had a doctor mention to me about a patient who kept running around for repeated treatments. It was used as an example of what kind of patient NOT to be. After reading what you wrote, I wonder if that patient was you.


See that's what I don't like about your comments, you keep saying I had 5 procedures for the fun of it. one my stent blocked, 2 my jug collapsed, 3 i had a trombosis. I had 3 within 3 weeks because I kept having complications. I choose to have the 1st and the last (I waited 4 months for the last one).

I did not run around, 1st in Poland and others with the SAME doctor in the states.

The problem is you know ALL THAT but you keep spreading vicious "partial" comments to make it look bad!

Tell me, after your procedure when they did the ultrason if you had a major problem you would have REFUSED to be treated!?!?
You reported it did not work for you but at least you are not worse!
I WAS!!!
User avatar
vivavie
Family Elder
 
Posts: 171
Joined: Wed May 05, 2010 2:00 pm
Location: QC, Canada

Postby L » Sat Jan 01, 2011 10:53 am

eric593 wrote:I think it is the kind of example that the anti-CCSVI camp will use to show that we are not making rational decisions but will run back again and again at whatever cost no matter what the risks or lack of results. IMO, it doesn't help our cause.


I think the last thing on your mind when faced with the complications that vivavie faced are whether or not it's good PR to get them fixed..
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 2:00 pm
Location: The United Kingdom


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: Rosegirl


Contact us | Terms of Service