Annette Funicello: Her life with multiple sclerosis

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Annette Funicello: Her life with multiple sclerosis

Postby milesap » Sat Oct 06, 2012 7:06 pm

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Re: Annette Funicello: Her life with multiple sclerosis

Postby milesap » Sun Oct 07, 2012 2:32 pm

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Re: Annette Funicello: Her life with multiple sclerosis

Postby HarryZ » Sun Oct 07, 2012 3:50 pm

Hmmm...it makes you wonder what Annette would be like today if the CCSVI treatment had been done on her 25 years ago. There was certainly a huge amount of blockage in her veins but the damage done to her brain by the aggressive type of MS that she has would be immense.

At least the two docs in the interview had the intelligence to state that there appeared to be some decent science associated with CCSVI and that a lot of research was required to learn a lot more. Certainly a far cry by some of the established MS docs who couldn't work fast enough to do quickly established and poorly designed "trials" to try and prove CCSVI was a scam.

I can also certainly relate to her husband who has spent years trying everything possible to make her beter.

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Re: Annette Funicello: Her life with multiple sclerosis

Postby erinc14 » Mon Oct 08, 2012 7:26 am

i imagine the drug that put her in ICU was FDA approved.
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Re: Annette Funicello: Her life with multiple sclerosis

Postby cheerleader » Mon Oct 08, 2012 8:00 am

I thought of you while watching the program, Harry. You and Glen are good men, deserving of thanks and admiration.
Prevention is everything. Just like stroke. My Jeff had very similar flow to Annette's when he was diagnosed with CCSVI (none on left, a trickle on right) but he was younger and just diagnosed with MS. He now has beautiful flow through his brain and has had a reversal of gray matter atrophy shown on MRI. Except for the scattered old scars, his brain is "normal." An organ suffers when it is not given nutrients and oxygen and perfused. Just like in Budd Chiari liver disease, after decades of slowed flow, the organ begins to atrophy and die. We need more research, we need more money and more doctors working together. I hope Annette's Neurological Fund can help. To donate or learn more: http://annetteconnection.com/About-the- ... h-Fund.php
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Annette Funicello: Her life with multiple sclerosis

Postby scorpions » Mon Oct 08, 2012 8:09 am

All the research money wasted on CCSVI that could have been put towards promising treatments over the last three years frustrates me. It is kind of like looking for the elusive sasquatch. While some claim to have seen it clearly the pictures they present are always blurry and most of us do not even believ Bigfoot exists in the first place but I am sure there will contiue to be more "sightings" by those looking hard enough. I hope everyone is doing well.
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Re: Annette Funicello: Her life with multiple sclerosis

Postby HarryZ » Mon Oct 08, 2012 8:47 am

erinc14 wrote:i imagine the drug that put her in ICU was FDA approved.


They didn't say but obviously very cautious in what they stated to avoid any kind of possible litigation.
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Re: Annette Funicello: Her life with multiple sclerosis

Postby HarryZ » Mon Oct 08, 2012 8:58 am

scorpions wrote:All the research money wasted on CCSVI that could have been put towards promising treatments over the last three years frustrates me. It is kind of like looking for the elusive sasquatch. While some claim to have seen it clearly the pictures they present are always blurry and most of us do not even believ Bigfoot exists in the first place but I am sure there will contiue to be more "sightings" by those looking hard enough. I hope everyone is doing well.


Everyone is entitled to their opinon, Scorp. Fortunately there are others in the field of medicine who totally disagree with you. The only way to prove/disprove CCSVI is to conduct the research in a scientific way and see where it leads.

You talk about wasted money for MS research. Take a look at the operation of the NMSS in NY City and see what kind of waste they have in the operation of their organization. The "promising" treatments you mention (I presume more immune system altering drugs) have more than enough research money going for them. If you look at their track record over the years, the only real benefit I see is the amount of money the drug companies have made from medications that at best, have minimal efficacy. I agree with you in that I don't believe in "Bigfoot" but I know that "Big Pharma" exists. One doesn't have to look at any pictures for verification...you only need to look at their bank accounts!! And yes, I am entitled to my opinion which obviously is very different from yours.

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Re: Annette Funicello: Her life with multiple sclerosis

Postby milesap » Mon Oct 08, 2012 10:20 am

Scorpian about two thirds of the 40,000 will disagree with you since they have relief of some symptoms and about half of those sigificantly including me with PPMS and yes without trials. They only way to convince the nay sayers, and those too afraid of their shadow is too have trials. By then well over hundred thousand will be treated and some will be studied then just maybe they will do what Kuwait that dumb arab country does automatically look for and treat CCSVI and MS.
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Re: Annette Funicello: Her life with multiple sclerosis

Postby ssmme » Mon Oct 08, 2012 10:49 am

This video makes me want to cry. No human being should have to go through this. It makes me afraid of my own future. Please don't argue over which prospective treatment is worth the money to check out. I'm happy to see people think outside the box. I applaud them whether it works or not. If we don't question current trends in treatment we'll never know if there are other options outside of or in conjunction with big pharma.

The new FDA approved MS drugs follow a pattern that computer programmers in the 80's followed...roll the boulder back to the top of the hill and let it roll down again and cross your fingers that it lands in a better spot. So much for finding the root of the problem...
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Re: Annette Funicello: Her life with multiple sclerosis

Postby lyndacarol » Mon Oct 08, 2012 5:54 pm

ssmme wrote:This video makes me want to cry. No human being should have to go through this. It makes me afraid of my own future. Please don't argue over which prospective treatment is worth the money to check out. I'm happy to see people think outside the box. I applaud them whether it works or not. If we don't question current trends in treatment we'll never know if there are other options outside of or in conjunction with big pharma.

The new FDA approved MS drugs follow a pattern that computer programmers in the 80's followed...roll the boulder back to the top of the hill and let it roll down again and cross your fingers that it lands in a better spot. So much for finding the root of the problem...


I wholeheartedly agree with every one of your statements, Marcia!
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