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shnakey.garg

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04/2011
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IND
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Haryana
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Gurgaon
Hi All,

My mother was diagnosed with Bulbar Palsy (ALS) in April 2011. She is advised Rilutek 50 mg and Evion 400mg(Antioxidant) twice a day.
The Doctor told us that this is the only medicine available wordwide for this disease.The medicine wont treat her but it can delay the symptoms for few months at max.

She is taking it regularly and one can say that the medicine is not helping her much as now she cant speak and not able to eat properly also.

We live in New Delhi INDIA.

Please help us with two queries:

1) If we can enroll her for Trail for ALS.
Please let me know if some one knows about any Clinical Trials for ALS in india.

2) At present are there any other treatments for ALS available in world which can really slow the progression of this disease or treat it completely?

Many thanks in advance.
 

lgelb

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I am sorry that your mother is not doing well. A quick look at the clinical trials registry in India, which you may want to monitor, reveals no ALS trials. I am not aware of anything so promising that you would want to take her elsewhere, but certainly have a look at other registries. Regrettably, the answer to your second question is at present, no.

If she cannot eat well, have you consulted the physicians there about a feeding tube?

Best,
Laurie
 
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shnakey.garg

Member
Joined
Aug 13, 2012
Messages
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Reason
Loved one DX
Diagnosis
04/2011
Country
IND
State
Haryana
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Gurgaon
I am sorry that your mother is not doing well. A quick look at the clinical trials registry in India, which you may want to monitor, reveals no ALS trials. I am not aware of anything so promising that you would want to take her elsewhere, but certainly have a look at other registries. Regrettably, the answer to your second question is at present, no.

If she cannot eat well, have you consulted the physicians there about a feeding tube?

Best,
Laurie
I was afraid to hear to this answer. But i think every one has to face reality at some point. I guess this is my time now.

As you said there is nothing so promising that you would want to take her elsewhere. Actually i have a valid working visa to USA, so earlier i was thinking of moving her to USA for better treatment but now i think when there is nothing promising, we will stay back in india for the emotional support that she needs at this time.

Please help me in making this decision:
Does it make sense to move to US and be a participant in any of the trials or should we stay in india, continue with Rilutek and wait for some treatment to be successful.

I will really appreciate inputs from members with more experience then me on ALS and different treatment available.
 

HelenL

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You should ask your Mom what she wants to do... she may prefer being comfortable in familiar setting. Just be proactive in what her medicals needs will be and stay in front of it.

there is a stem cell clinical trial in Israel, maybe you could find out if they're still accepting patients? The company (Mindstorm?) may also be starting these trials in the U.S., pending FDA approval.

Good luck!
 

brooksea

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shnakey.garg, I'm very sorry your mother has ALS.

As your mother's condition progresses, she will need much care. If you have a supportive family, I would advise staying in New Delhi. If you do decide to move to US for a trial, be aware that any drug or procedure still has to be approved by the US FDA if it shows some promise. Having said that, if you have researched a trial and really think it might be of benefit in the short term, go with your gut feeling. Of course, what your mother wishes is paramount, as Helen said.

this is what Helen was speaking of:

www.brainstorm-cell.com/
 

shnakey.garg

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City
Gurgaon
I really Appreciate HelenL and brooksea for their prompt responses.
I think we will stay in india as she prefers being comfortable in familiar setting.I just hope the treatment for ALS is found ASAP.

Currently my mother is on Rilutek 50 mg and Evion 400mg(Vitamin E). But i was searching ALS TDI website and found a trail which is to confirm that Viatmin power to delay the symptoms of ALS reduces when given in combination with rilutek.

are there people who have been receiving this treatment and if yes then, has it helped them?
 

CGARS

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Apr 24, 2012
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PALS
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CA
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Ontario
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St. Catharines
FYI - Brainstorm's USA stem cell trials are still awaiting FDA approval.
They expect the approval early 2013, where they will have the application procedure on their website where you can apply to be a guinea pig.
Good luck to you and your mom.

Casey
 

sam58

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western australia
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perth
You may want to take a look at this poster session at the 40th Annual Meeting of Neuroscience, San Diego, Nov 13-17, 2010. I don't have any more information.

Wish you and your mom all the best.
 

sam58

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The moderators have apparently removed the link I quoted. So just Google for Western
Als survival BNG st Diego.

Best wishes.
 

Wings

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You should ask your Mom what she wants to do... she may prefer being comfortable in familiar setting. Just be proactive in what her medicals needs will be and stay in front of it.

there is a stem cell clinical trial in Israel, maybe you could find out if they're still accepting patients? The company (Mindstorm?) may also be starting these trials in the U.S., pending FDA approval.

Good luck!

Thanks Heleni - i will look into this also :)
 
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