ALS

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

Post by Billmeik »

My old friend Carla died of als today.

i was going to forward her a paper I saw last night on blood flow, ccsvi and als.


here's her blog..


http://carlamuses.blogspot.com/

http://blog.bobsongs.com/tag/carla-smith/

she was a musician. I cry when I hear this.

http://carlamuses.blogspot.com/2009/05/ ... -song.html
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gibbledygook
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Post by gibbledygook »

I'm sorry to hear that. ALS is an absolute nightmare. what was the paper which you were going to send?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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cheerleader
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Post by cheerleader »

Billmeik...this just breaks my heart. I'm so sorry for Carla. ALS is brutal, unrelenting, cruel and yes--there is most likely a blood flow connotation. It is not as obvious as the extracranial blockage of CCSVI-- yet. the docs involved with CCSVI are looking at it....they'll get there, but too late for our friends.

Here's our buddy, Ned Mann. Ned played bass on Jeff's first album (which was titled "Liberation"--I know, the irony does not escape us)
Jeff just played on Ned's new album. Ned mixed the record using a dot on his forehead and computers. He no longer talks or moves. He is an incredible man--

feature on Ned in San Diego uni0n Tribune
let their stories give us pause, a chance to reflect-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Cece
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Post by Cece »

condolences for your loss...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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IHateMS
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Post by IHateMS »

a friend has als... he lives next door.... it is a dreadful disease.

what is the paper?
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cheerleader
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Post by cheerleader »

IHateMS wrote:a friend has als... he lives next door.... it is a dreadful disease.

what is the paper?
From what I understand--ALS may be related to occlusion of cerebral arteries. Very different from CCSVI, in that it is intercranial and arteries, rather than extracranial veins. But still looking like a stop of bloodflow

Here are some abstracts:

http://www.nature.com/jcbfm/journal/v20 ... 0900a.html

http://www.jneuroinflammation.com/content/5/1/29
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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catfreak
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Post by catfreak »

Billmeik,

I am so very sorry for your loss.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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blossom
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Post by blossom »

to loose a friend is to loose a part of yourself. so sorry for your loss
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Billmeik
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Post by Billmeik »

I cant find the paper . The other day cheerleader pointed to an impressive page with 44 papers. It was one of those I think.
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cheerleader
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Post by cheerleader »

Billmeik wrote:I cant find the paper . The other day cheerleader pointed to an impressive page with 44 papers. It was one of those I think.
found it, sweetie...
that was all info I needed.

http://www.ncbi.nlm.nih.gov/pubmed/20400230

The 44 papers are the published CCSVI research papers listed on this site--

http://csvi-ms.net/en/content/publicati ... -sclerosis

I just realized...your Carla is the same Carla my friend John R. played piano for--from the Bay Area--...she was an exquisite singer, writer, beautiful woman. Oh, how sad. Listen to her music, folks. She was such a gifted woman.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Billmeik
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Post by Billmeik »

f a venous constriction can be reached endovascularly it can be dilated, and such dilation may constitute cure of ALS.

but that would require als patients to have constricted veins and the don't do they?

(I have to talk to carlas son at the funeral I hope he doesnt get this...)
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cheerleader
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Post by cheerleader »

Billmeik wrote:
f a venous constriction can be reached endovascularly it can be dilated, and such dilation may constitute cure of ALS.

but that would require als patients to have constricted veins and the don't do they?

(I have to talk to carlas son at the funeral I hope he doesnt get this...)
No...they don't have restricted veins. Dr. Zamboni looked for this in ALS patients, and he didn't find it. But other doctors are looking at the arteries, and finding abnormalities. Carla's son will probably be just fine (and reading his blog...he is already so far beyond his years in understanding) 90% of ALS patients have no family history...it's a pretty rare genetic defect. Thanks for sharing Carla with us--
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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cheerleader
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Post by cheerleader »

Blessings to you, Billmeik...Carla's obit in the LA Times today.
Wanted you to see--

take care-

link
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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CRHInv
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Post by CRHInv »

I am so sorry. She was an amazing lady.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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scorpion
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Post by scorpion »

Sorry for your loss Billmeik.
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