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hjlindley

Senior member
Joined
Dec 1, 2011
Messages
760
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
There are a wonderful bunch of neurologists helping us to not get scammed. Also, there was a webinar (I think it was a NEALS one ) that showd the surgical equipment and technique used to implant the stem cells. Injecting stuff into the blood isn't going to get them into the cerebral-spinal system...i.e. the blood/brain barrier. We are all scared, but still need to make informed, intelligent decisions. Oh, I sure miss Allen's wisdom too!
 
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momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
The ALS Association is sponsoring a webinar about stem cell treatment next Tuesday. You can get info on how to sign up to view it live online from their website. They archive them so you can watch at your convenience. They also have a fb page and you can have their news feed sent to your "wall' or e-mail.

60 Minutes had a show about stem cell treatment done in another country. You can watch it online. What an "eye opener"!
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
We had a member. Shane, who went to Monterrey Mexico, at the legit hospital there. It did not work, but it didn't kill him either. Some of these clinics, in Germany and China are very dangerous.
 

pearshoot

Senior member
Joined
Feb 6, 2011
Messages
633
Reason
PALS
Diagnosis
02/2010
Country
US
State
mo
City
nixa
twelve pals was in the first trial at emory u. the same 12 are being called back over a period of time. from what i read they will reverse the procedure this time. first time lower back, this time upper back. expect it will be some time before results are published but i am very optimistic. do not consider any overseas offer, not long ago china was doing stem cell for blind, local man did the $25,000 trip, still blind
 

dberbicegirl

New member
Joined
Jun 11, 2012
Messages
9
Reason
Loved one DX
Diagnosis
01/2012
Country
US
State
MARYLAND
City
SILVER SPRING
Thanks everyone for your input. It so happened that my brother was so discourged with the progression of the disease that he decided to try the stem cell treatment in the Gulf Shores. I accompanied him. It was horrific for me!
 

GKGK

Active member
Joined
Jun 4, 2012
Messages
33
Reason
Learn about ALS
Country
BR
State
ES
City
Vitoria
Thanks everyone for your input. It so happened that my brother was so discourged with the progression of the disease that he decided to try the stem cell treatment. I accompanied him. It was horrific for me!

Whats happened?

All the best,

GKGK
 

GKGK

Active member
Joined
Jun 4, 2012
Messages
33
Reason
Learn about ALS
Country
BR
State
ES
City
Vitoria
What's happened?

Best,


GKGK
 
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dberbicegirl

New member
Joined
Jun 11, 2012
Messages
9
Reason
Loved one DX
Diagnosis
01/2012
Country
US
State
MARYLAND
City
SILVER SPRING
It was horrific for me in the sense that my brother was dependent on me in every aspect. He appeared very scared and not communicating his feelings. Despite he got a definitive diagnosis he still does not want to accept it. He had deteriorated so much to me since I last saw him,that I had a very difficult time holding back my tears. I know that weeping was not course of action, but I just could not compose myself.
Anyway he had the procedure done and had a terrible reaction to the sedation. They used his own cells which they liposucked from his belly fat. So far he is doing well, he has gained back some weight and his saliva has lessened in his mouth. We now have to wait and see how he progresses. He is very anxious, which I think will slow the process down.
The possibility exists that he may not get the kind of results he expects, but is quite hopeful. I pray that he puts all of his affairs in order and relax. The Doctor has prescribed some antidepressants for him which is assisting him. I think he is now convinced that he cannot fly anymore and willUse the time to concentrate on liquidating his businesses.
God bless each and every one of you and I hope and pray that a cure is forthcoming.
 
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