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chaitali.dey

New member
Joined
Nov 22, 2011
Messages
1
Reason
CALS
Diagnosis
10/2011
Country
IND
State
West Bengal
City
Kolkata
Hi all,

I am new to the ALS group, recently my dad was diagnosed with ALS in October 2011 but may be it started a year back when he used to feel dizzy all the time. The doctors diagnosed it as problem with ear fluid, since he had difficulty in hearing on right side. Infact the dizziness stopped after taking treatments for the same.

But the ALS symptoms progressed some 3 months back. He has slurred speech, excess saliva, difficulty swallowing liquids and problems in walking (right leg). I am from India and here there is not much support for ALS here. I have written to a couple of research institutes over here but not sure about the ongoin researches if any.

I wanted to know if any of you can provide us with insight on the new drugs or researches (Stem cell research) which have helped in any way. And which institute is the best for consultation for ALS. We are ready to travel abroad for treatment till its possible for him.

As of now the only drug that has been prescribed by the doctors here is Rilutek and some vitamins. It would be great if any of you can provide more information on the drugs that might help. Also dad is on speech therapy now.
 
What ever you do, do not travel overseas for stem cell treatment. It's all baloney apart from the " real studies being carried out at the moment in the US. Stem cell treatment is still at the safety stage of the trials. One of the members here has been on the study.
There are legitimate clinical trials of new agents being carried out world wide. One such trial is the Dexpremapezole study which has completed recruitment I think, but ? Starting another stage of the study soon.

There is no successful treatment for ALS at the present moment, but many quacks preying on the innocent, so be careful.
If it's not a legitimate clinical study, don't touch it.

You would be best to consult the neurologist treating your father, about what studies are currently running in your country.
 
Especially do not go to Mexico. There was a story on 60 Minutes that talked about the quackery in the ALS Clinic there.

My husband is on the Dexpremapezole trial but we do not see the 40% reduction in symptoms so we must have the placebo...

Good Luck.
 
Scroll way up to the blue bar and find "search", click on it and then type drug trial and a list will come up. Click on the numerous threads there and you will find all kinds of information about new drugs and drug trials.
 
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