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givenin

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My husband starts his Lithium today and then in a couple of weeks he will start on the riluzole. After speaking to Dr. White from the ALS clinic in Calgary my husband was warned strongly not to put to much trust in the Paitents Like me forum he said that they were aware of some that were posing as Pals and leading people along on the site and not being stopped. My husband found that very difficult as he is very attached to the site and in close contact with some that are claiming a huge improvement in their health do to the Lithium and he is so desparate to believe them. I don't know how they monitor that site but not as good as what is being done here. Keep up the good work and lets hope this Lithium is the one.
 

Jamiet

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While there are imposters, and we've seen some here i'm sure that we don't know about, i think the majority are straight and honest.

This lithium is real, real effects from people we've all known for some time. My personal friend here with the ALS assn has seen the effect of lithium first hand on one of her PALS she takes care of and in a few weeks the lady is talking much better, etc. Wether it's the placeo effect or not is YTB.

I hope this makes you feel a little better, maybe the doctor should go back to charm school, then take a look in the mirror.

Rgds,

Jamie
 

olly

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i do not know anything about that site but i do know from research on web people claim to have been cured by various things.
one man who claims to have been diagnosed als , said he had no use of his atropied body and was on the brink of death. he claims to have cured himself through self medication of vitamins and other stuff and now leads a normal life. i say he's a hoax or never had als but something curable. it's terrible how these people give out false hope. i was only thinking about the young man from australia who was going abroad for search of a cure, i don't think he's been in touch since,i hope he's ok.
i do hope the lithium will do some good .
 

givenin

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I don't think the Dr. was wrong in the way he warned my husband knowing what he has atempted in the past from so called honest people. One was for the cost of $300.00 a shot in the ass of sheep stem cells for at least a year proven to cure ALS but blocked by the Pharmaceuticals companies and only availible through this one guy and so on. Normal responces all for someone who has been given no choice and I am glad the Dr. did as some of these people are claiming to walk again after a very long time in chair, maybe they can but I will wait to see for myself.
 

MtPockets

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It is a shame that some people will take advantage of another person's suffering to make a dollar. We all need to be aware that there are people like that around who will sale snake oil, if you will buy it.

However, I have read some encouraging reports from Medical sources about the Lithium studies currently going on. Lets all hope that something works.
 

stevef

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It is terriable that people would lie about that. why would they unless they make money off lithuim. I know one thing I trust what the people in here are saying about Lithuim and some of it looks incouraging. God hopefully will find a treatment and a cure soon and maybe the lithuim is a start.
 

liz

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I frequent a number of ALS related forums on the Internet, including the one mentioned above, Patients like Me. While there are a few people there who are claiming to have very positive benefits from taking Lithium, there are others expressing quite a bit of skepticism. Kind of reminds me of this forum - lots of different people with different points of view. I think it makes a lot of sense for a physician to caution a patient not to believe everything they read on the Internet; but, I wouldn't single out one particular forum.
 

brooksea

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I and my husband frequent PLM site and I haven't seen any postings from PALS claiming any HUGE improvements, with exception of one and he is very young with early onset. In fact there are postings stating just the opposite from some PALS due to side effects they are experiencing from Lithium.

If you go to the web site that is tracking the self study of Li, you will see the stats on the chart, and not much has changed in the PALS listed. Mostly small improvements. My husband and I will take those small improvements!

The amount of Li to maintain the blood level needed for supposed improvement of symptoms, as long as monitored, should not be a problem for most people. And I believe most PALS embarking on the self study of Lithium are being cautiously optimistic.


Is your Husbands doctor in touch with the administrators of that site? Believe me, the people that post on PLM can be ruthless and are pretty keen on figuring out who is a fraud and will call them out in a second. If a poster doesn't fill out their profile, most of the time you can figure they are an imposter.

It's unfortunate, but there are evil people everywhere. But I just don't see what there would be to gain by maliciously promoting a $3 rx as a miracle. IMHO:neutral:
 
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Paul Wicks

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Dear all,

I just wanted to drop a note to tell you about the new tool we've developed specifically to help people make up their own minds about lithium.

You can use it to "filter" different patient subgroups and see what effects it has on the graph. As you can see, you get different results based on what questions you ask, exactly as in clinical trials.

I'm afraid I haven't come across Dr White's name before, but if he has any evidence for people pretending to be ALS patients I will of course do my best to get to the bottom of things. We're hoping to send a letter out shortly to the ALS docs of North America & Canada explaining what we're up to. We completely understand people's skepticism and that's why we decided to put a tool out there that does not definitively say "yes" or "no" but rather is a tool which you can use yourself and draw your own conclusions.

Of course in reality we will still need time and participants to see whether we can identify an effect. But it's also an unfortunate truth that all the "official" trials out there will take time and funding to get off the ground. If we can establish in that time that lithium doesn't work maybe we can save everyone some effort! Then again, if there is an effect, the beer's on us.

All the best

Paul
 
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givenin

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I don't either and that is what concerns me there seems to be nonthing to gain for it so why. And any improvment at this stage would be a blessing, my husband was given an estimate of approx 2 years with the rate he was progressing and we are at 17 months since third opinon. It could be the way he is understanding what he is reading meaning what he wants to hear. Als has thrown what used to be a very logical thinking man into a very irrational thinking man and it is very hard for me and our girls to watch him behave this way he guards the PLM web site closely and allows me to read only a few things to prove a point. As for the warning from the Dr. I have to beleive that he has some proof of his warning and would not state otherwise.
I have to have hope the Lithium will help slow down this THING! Our latest kick in the pants is my father being dianosed with Prostate Cancer and at the age of 84 and good health is low on the list for getting help and with this there is something to help but his age is a factor against it.

Time for me tro sit and have a glass of Merlot....or maybe 2. My husband used to enjoy it but finds it taste funny now.


I would also like to add that even though I agree with the Assistant title I prefer the term Caregiver I care and I find Assistant term a little to cool for what I do more like a paid postion and I hope I am not affending anyone stating this.
 

brooksea

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givenin,

I'm very sorry your husband may be acting irrational. That does seem a little odd (guarded use of the web site).

Sounds like you have a lot on your plate with your father now having cancer, very sorry. I understand where your coming from, as I've had to be the main person taking care of my mothers affairs for quite some time since her 2nd car accident. She was in a nursing home and now assisted living facility and now demands to go back home, even though I've explained to her that I will not be able to drop everything for her now. I don't know what I'm going to do! So here we go again!

As for the "assistant" title, I've been thinking about that. You are right, it does sound a bit cold and I keep picturing myself following behind my husband with a notepad!:rolleyes: So I've decided to drop all of it because after all I am his "wife." And who else should care more?

Take care and I truly hope your husband has improvements on Lithium. If you get the chance there is a new chart that you may look at on PLM that is following the results of Li treatment- maybe you can look at it. If Li can slow this down I will take it just to have a little more time with my guy.

Take care and I will be praying for you and your family...
 
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northerngirl

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Jan 9, 2008
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Lost a loved one
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Hey you! Hang in there. Dr. W was right about none Dr. approved therapys. But the point is regardless if its magic, voodoo, or science. the lithium is looking good. Staying focused on something positive is a good thing. But get that hubby back on the computor to to google " resveratrol als " and maybe he will change his mind and try mabey a red Zinfandel with you for medicinal reasons of course. :lol:
 

givenin

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PALS
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b.c.
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salmon arm
Thanks Jimercat I am not a believer but have been told that the lord will only give you what your shoulders can bear and I feel mine growing bigger by the moment. We all seem to pull through all though some days are worse than others and this one was pretty full and am sure more to come. It sure helps to type (talk) here it's like dumping the overfill making things more bearable. As for the guarded web site I have come to think that this is one thing he can have all his own without needing help or losing any dignity over, he has lost so much else.
Thanks for the link.

Hmmm red Zifandel.. sounds good.
 
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