Comments on: Does It Work? Lithium and ALS http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/ PatientsLikeMe - Patients helping patients live better every day Sat, 07 Nov 2009 20:50:49 +0000 http://wordpress.org/?v=2.7 hourly 1 By: tom bassett http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-24646 tom bassett Sat, 05 Sep 2009 00:19:57 +0000 http://blog.patientslikeme.com/?p=64#comment-24646 I went on 300 mg daily 3 weeks ago just incase it does slow progression. I hope and pray it does....we'll see. I went on 300 mg daily 3 weeks ago just incase it does slow progression. I hope and pray it does….we’ll see.

]]> By: Leslie Monitto http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-21459 Leslie Monitto Thu, 02 Jul 2009 22:41:06 +0000 http://blog.patientslikeme.com/?p=64#comment-21459 Were lookin for hope that Lithium does provide a slowing effect of this desease. Can you provide the trial study results. I have a very close friend living in Bulgaria we are despreat to provide something that will actually help. Im currently reviewing the 125 research trial studies, hoping to find something. Is there a special type of lithium that I need to look for. How do we monitor the lithium in his system? Were lookin for hope that Lithium does provide a slowing effect of this desease. Can you provide the trial study results. I have a very close friend living in Bulgaria we are despreat to provide something that will actually help. Im currently reviewing the 125 research trial studies, hoping to find something. Is there a special type of lithium that I need to look for. How do we monitor the lithium in his system?

]]> By: sherry http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-16107 sherry Fri, 13 Mar 2009 16:01:38 +0000 http://blog.patientslikeme.com/?p=64#comment-16107 been on rilutek 1 wk,had bulbar 2 yrs now beginning arm + leg weakness,can u take lithium and either of the antibiotics they are currently doing trials on,i go to dr at osu been on rilutek 1 wk,had bulbar 2 yrs now beginning arm + leg weakness,can u take lithium and either of the antibiotics they are currently doing trials on,i go to dr at osu

]]> By: Christine Kraft http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-15834 Christine Kraft Thu, 05 Mar 2009 11:32:44 +0000 http://blog.patientslikeme.com/?p=64#comment-15834 The PatientsLikeMe approach is incredibly exciting from a health communications perspective. First, it breaks down the feeling of isolation that contributes to our experience of illness. (This alone is empowering.) Second, the PLM approach provides meaningful data visualization which really adds to the open community experience. Lastly, the front end was designed with ease-of-use in mind. These 3 traits position this product to be very helpful for clients seeking knowledge of symptoms and treatments. You are empowering all of us (patients, editors and advocates) to tell a much more compelling story with this approach and I can easily imagine many more applications of the model. The PatientsLikeMe approach is incredibly exciting from a health communications perspective.

First, it breaks down the feeling of isolation that contributes to our experience of illness. (This alone is empowering.) Second, the PLM approach provides meaningful data visualization which really adds to the open community experience. Lastly, the front end was designed with ease-of-use in mind. These 3 traits position this product to be very helpful for clients seeking knowledge of symptoms and treatments.

You are empowering all of us (patients, editors and advocates) to tell a much more compelling story with this approach and I can easily imagine many more applications of the model.

]]> By: richard la flower http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-15108 richard la flower Sun, 22 Feb 2009 01:06:21 +0000 http://blog.patientslikeme.com/?p=64#comment-15108 my doctor will start me on lithium next wek too, my doctor will start me on lithium next wek too,

]]> By: NancyS http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-13691 NancyS Tue, 03 Feb 2009 01:06:02 +0000 http://blog.patientslikeme.com/?p=64#comment-13691 Diagnosed with Bulbar palsy/Probable ALS last month. I will be starting on Rilutek next week and my doctor will start me on Lithium a month later. He wants to see if I have any side effects from the Rilutek first. Here is hoping for the best Diagnosed with Bulbar palsy/Probable ALS last month. I will be starting on Rilutek next week and my doctor will start me on Lithium a month later. He wants to see if I have any side effects from the Rilutek first. Here is hoping for the best

]]> By: alex http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-11847 alex Sun, 11 Jan 2009 19:25:55 +0000 http://blog.patientslikeme.com/?p=64#comment-11847 Sorry, one more question: did any one tried the traetment from: http://tcmtreatment.com/ the say many promising things, but it sounds not really clear...any feedback wotld be highly appreciated.. Alex Sorry, one more question:
did any one tried the traetment from:
http://tcmtreatment.com/
the say many promising things, but it sounds not really clear…any feedback wotld be highly appreciated..

Alex

]]> By: alex http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-11846 alex Sun, 11 Jan 2009 19:23:04 +0000 http://blog.patientslikeme.com/?p=64#comment-11846 Dear site founders & administrators, sorry for may be a very basic question: how it is possible to see the results of on going study with Lithium? (how many people say "it is helpful", how many are not satisfied). This is very important for us now, as my mother was diagnosed an ALS recently...but the case is not an ordinary one..she has a chest cancer almost at the same time... we are trying to take any chance: Considering Lithium therapy now. many thanks for any feedback. Regards, Alex Dear site founders & administrators, sorry for may be a very basic question: how it is possible to see the results of on going study with Lithium? (how many people say “it is helpful”, how many are not satisfied). This is very important for us now, as my mother was diagnosed an ALS recently…but the case is not an ordinary one..she has a chest cancer almost at the same time…
we are trying to take any chance: Considering Lithium therapy now.

many thanks for any feedback.
Regards,
Alex

]]> By: joe cornelio http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-8823 joe cornelio Wed, 17 Dec 2008 21:30:19 +0000 http://blog.patientslikeme.com/?p=64#comment-8823 Around 1980 or 1981 i was diagnosed as having mood swings and placed on lithium carbonate. Around 1995 my new doctor took me off lithium.On july 2006 i was diagnosed with ALS . Has anyone else been on lithium for other reasons then taken off lithium and developed ALS. Around 1980 or 1981 i was diagnosed as having mood swings and placed on lithium carbonate. Around 1995 my new doctor took me off lithium.On july 2006 i was diagnosed with ALS . Has anyone else been on lithium for other reasons then taken off lithium and developed ALS.

]]> By: Samit http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-8391 Samit Wed, 10 Dec 2008 11:15:53 +0000 http://blog.patientslikeme.com/?p=64#comment-8391 My father started lithim trial yesterday with 300mgX2. Will let you know in case any improvement My father started lithim trial yesterday with 300mgX2.
Will let you know in case any improvement

]]> By: jacdings http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-8312 jacdings Tue, 09 Dec 2008 13:06:41 +0000 http://blog.patientslikeme.com/?p=64#comment-8312 lithium trail start at this time in the netherlands, I was ask for this but only 50% get lithium en other placebo,so I say no ,I start lithium for my self whit control of the docter,and see the rest by patientslikeme. lithium trail start at this time in the netherlands,
I was ask for this but only 50% get lithium en other
placebo,so I say no ,I start lithium for my self whit
control of the docter,and see the rest by patientslikeme.

]]> By: Ken Charles Smith http://blog.patientslikeme.com/2008/02/14/does-it-work-studying-lithium-treatment-for-als/comment-page-1/#comment-8164 Ken Charles Smith Sat, 06 Dec 2008 02:33:32 +0000 http://blog.patientslikeme.com/?p=64#comment-8164 I was diagnosed with Bulbar ALS in August, 2008. I had symptoms for 8mo. prior to diagnosis. I take Rilutek since Oct., 2008 and started in the Lithium Clinical Trial in Arizona just over 2 weeks ago. So far, I cannot tell if my disease progression has decreased. My speach is very poor and difficult for others to understand and my swallowing is also very difficult. I try to eat small cut-up portions or much softer foods and it is easier to drink thick liquids. I walk with a walker. I am very interested in any information you come up with. Thanks for this website. Ken I was diagnosed with Bulbar ALS in August, 2008. I had symptoms for 8mo. prior to diagnosis. I take Rilutek since Oct., 2008 and started in the Lithium Clinical Trial in Arizona just over 2 weeks ago. So far, I cannot tell if my disease progression has decreased. My speach is very poor and difficult for others to understand and my swallowing is also very difficult. I try to eat small cut-up portions or much softer foods and it is easier to drink thick liquids. I walk with a walker.
I am very interested in any information you come up with. Thanks for this website. Ken

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