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abaeza

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Joined
Aug 10, 2010
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Reason
CALS
Country
US
State
georgia
City
atlanta
Ok, so I will try to be as clear as possible, since English is not my first language. Im from Chile and believe it or not we have quite some advancements in terms of trials and medical proceadures.
My dad was diagnosed in august last year with ALS and as probably has been for all of you its a pretty devastating news, specially the uncertainly of the diagnosis.
Because of the not well documented cost effectiveness of the Riluzol my dad decided not to take it, but he has been taking all the other battery of drugs available (Lithium, antioxidants, etc).
As you probably know, the steam cell replacement is one of the option and in Chile we have had about 30-40 cases of ALS which have had a succesfull procedure (by succesfull procedure I mean just that, they didn’t have issues with the surgery). The steam cell procedure was performed using the same patient cells which were taken out from the spine, treated and then injected back in the brain. The hard part here, as it is for all the treatments related to ALS is knowing if the proceadure have had any effect (either by improving or slowing down the progression), but since the rate at which the disease advance is uncertain, this is a very hard question to answer. Anyways from my stand point of view this proceadure didn’t have a huge impact on my dad.
A few weeks ago, and just by coincidence we heard about a procedure that has been used in patients diagnosed with MS (multiple sclerosis) and which have helped them to improve their well being. Seems to be that MS patients have also what is called TOC (Thoracic outlet syndrome) and which is possible to cure with surgery. Of course when we heard about this we took the chance, my dad was not able to perform almost anything by himself, very weak, etc. (I know because Im one of the primary care givers). After the surgery which was a week ago Ive seen some improvement, specially in his strenght and we are hoping that there are some other improvements .

Well this is our story, I will post news as my dad shows changes.
Best
Alvaro
 
Please keep us informed. Any "ray of hope" would be greatly welcome. Having ALS is so discouraging, and it seems like there is no progress toward a cure.
 
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