Our NMSS and a puzzling review of CCSVI

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

Postby muse » Thu Jan 07, 2010 7:50 pm

It really doesen’t matter whether Arney & Co. are going to read that brilliantly written post by Sandy. What’s matter is that she had that necessity to write it and hundreds, nay thousands of people with MS all over the world are going to read it like me a German born woman (MS dx ’97, CCSVi dx ’09) living in New Zealand!
“CCSVI in MS” is a world wide movement now without a leader (hurray!!!) and as stronger the rejection of the medical establishment as stronger the rebound will be. :D :D :D
Great bunch of people. Thanx!
Best
Arne

http://www.csvi-ms.net/en
Last edited by muse on Thu Jan 07, 2010 7:54 pm, edited 1 time in total.
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Postby Mechanicallyinclined » Thu Jan 07, 2010 7:53 pm

If Arney is the person you say she is Leetz I feel sorry for her. She's in one tough position right now. While I feel sorry for the words she has to hear, it must be understood that she is representing the society that acted in the manner it chose to. We mean no ill feelings to you personally Arney, but the societies on both sides of the borders have been trusted to serve our best interests for alot of years through tons of fundraising events that they missioned will serve to provide a cure for MS.
THey should have acted on this theory or looked at it with at least some interest long before this. The MS society is the focal point that people looked to for hope in the future. With a very high level of expectancy did we rely on them being on the leading edges of research at all times. I'm not at all impressed with the society's actions and response on this side of the boarder. It was irresponsible. I do not blame Sandy's reaction one bit.
When you hear of CCSVI and research it and you see all the road blocks put up when all you want to is see if you have that condition.... I'm not going to apologised for being **ssed off. Now, the time it is taking to just get organized so research can begin is unacceptable. Then how long for the research before anything is accepted?
Tysabri has killed 28 people (if I can steal that stat from Sandy) and the use of possible death through CCSVI treatment is used as an arguement. I hate the politics of all the crap that's going on here that I've seen from the MS Society, the medical system and the government. Access to reasonable health care? I've been denied access in Canada because I have MS! Let's waite 5 years and see what we might find? If this was a new drug that came to light it's all good . Welcome another drug! Sorry Arney for being hard on you personally. The anger is not dirested to you. [/quote]
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Postby JoyIsMyStrength » Thu Jan 07, 2010 7:54 pm

Sandy on second read my only concern is this statement:

Tysabri, an NMSS favorite, has killed 28 people so far


Is that accurate? If so I've been way out of the loop.

------------------

Thanks to Leetz for taking the time to call Arney -- she sounds like a nice person. You did a good deed today and you helped build a bridge.

Pam-Joy
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Postby bestadmom » Thu Jan 07, 2010 8:01 pm

Wednesday, January 6, 2010 - Boston Business Journal - by Julie M. Donnelly

Biogen Idec says that four more cases of the rare and serious neurological infection known as PML have been detected in patients taking its drug for multiple sclerosis, Tysabri.

That brings the total number of progressive multifocal leukoencephalopathy cases to 28 since July 2008....


SandyK's #'s are spot on. The numbers are expected to rise as more and more people on Tysabri approach the 2 year mark.
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Postby JoyIsMyStrength » Thu Jan 07, 2010 8:02 pm

Just to be clear, is that CASES or DEATHS? I thought the death number was lower...?
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Postby Mechanicallyinclined » Thu Jan 07, 2010 8:09 pm

I have a friend that's gone through hell with tysabri. I'm not just feeding the fire. I've seen it for fact. Once off of it, she got back to semi normal.
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Postby patientx » Thu Jan 07, 2010 8:13 pm

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Last edited by patientx on Fri Jan 08, 2010 4:43 am, edited 1 time in total.
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Postby JoyIsMyStrength » Thu Jan 07, 2010 8:14 pm

Oh don't get me wrong. I won't touch the stuff. I have declined all 4 times it was proposed to me by 3 different neurologists.
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Postby MrSuccess » Thu Jan 07, 2010 8:43 pm

Wow. Lot's of heat on this subject.

As I have said before , we all want this investigated and FUNDED yesterday. Then we can decide who the asses really are.

Seems to me the skeptics should gleefully fund CCSVI if they are so
certain CCSVI is bumpf.

I say ...don't tell me ...show me .


As for the MS Society timetables and procedures .... I have to respect the process , as charlatans will try to get funding ....if the process is not carefully guarded.

Six months seems like forever ....but let's let the process happen .

It's all good.





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Re: SPOKE WITH ARNEY........

Postby jay123 » Thu Jan 07, 2010 8:48 pm

leetz wrote:SHE IS REAL.......VERY NICE ACTUALLY...spent at least a half hour on the phone with her advocating for CCSVI...started out the conversation VERY angry, ended the conversation in tear's. I was assured that the society is going to advocate for us---I found myself testing her knowledge to see if she was infact whom she said she was(I believe she is). She was given my name, number and e-mail address if she needed to contact me for any reason. She seemed concerned and stated that she has a very close friend who suffer's from MS, I explained that having a "friend" with MS is alot different than having MS.

Let's give her a chance and see what she can do as far as publicity concerning CCSVI---

you can give her a call at #212-476-0436******CALL AND ADVOCATE****


Leets, Since you did have a good talk to her you should have her go in and edit her post putting her full name and contact info on that post, not a later one. If she is writing on behalf of the NMSS it should be documented.

Sandy - great letter! I have a lot of friends who participate in the walk for me, I am going to talk to them about doing the walk again but sending the money they raise elsewhere.
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Postby leetz » Fri Jan 08, 2010 1:22 pm

that was my point to her exactly...i was very suprised that she picked up the phone let alone talked to me for at least a half hour...LET ME MAKE THIS CLEAR..I TOO AM VERY DISAPOINTED that NMSS has failed us and really has only responded because of the pressure that has been put on them by THOSE OF US THAT BELIEVE IN CCSVI...while speaking to her she re-asserted the fact that she is only one person and will do whatever she can to help...I STrONGLY recommend everyone call her...her # is posted on this forum topic (that is how I got it)...take care...God Bless!

LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby AlmostClever » Fri Jan 08, 2010 1:44 pm

From Shannon's Dec. 10 post (regarding the CCSVI death):

"The truth is, one death occurred that was not related to CCSVI, but due to the coumadin that was taken following surgery, there was hemhorraging from a different condition that could not be stopped due to the coumadin."

I brought CCSVI up my my nuero at my meeting today and she responded that she had heard someone died from the procedure, but she did not know exactly how.

I think alot of people (including nueros, vascular surgeons, etc.) are writing CCSVI off because of this incident.

Is there anyway we can verify or document the actual cause of this person's death?
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Postby AlmostClever » Fri Jan 08, 2010 2:14 pm

FYI My nuero just sent me an e-mail saying that the Annals of Nuerology will have a story about the death this month. (Wow - she's pretty cool!)
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Postby jimmylegs » Fri Jan 08, 2010 4:26 pm

search for posts earlier in 2009, mentioning holly or peekaboo or peek, to read what we know here at TIMS. what i know, and many here knew holly much better than i did, is that she suffered an arterial bleed in her brain on the plane trip home after her surgery. she appeared to fall asleep. the docs were not able to stop the bleeding due to the post surgery blood thinners. dr. dake went to see her and together the docs decided that the arterial bleed was not related to the venous surgery. i miss holly hers was a wonderful presence here at TIMS.
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HOLLY

Postby leetz » Fri Jan 08, 2010 4:45 pm

GOD BLESS HOLLY AND HER FAMILY!!!

LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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