Old 07-31-2013, 03:17 AM #1 (permalink)
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Default I'm HELL MAD AT....

Those slow progressive PLS sufferers that appear on TV claiming they have ALS and were given the 2-5 prognosis yet you see them doing some mild excesises etc....


I have read and watch thousands of videos and medical data in regards to ALS that its strictly indicates that PALS live from 2-5 years the most....

Some cases (vents, etc) get to reach 10 years or so...

But common .. Don't go out in public if you are a slow progressor PLS suffer and say HEY LOOK AT ME I HAVE ALS FOR A QUARTER CENTURY... YOU CAN DO IT TOO!


SO MAD!

JON
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Old 07-31-2013, 10:16 AM #2 (permalink)
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Default Re: I'm HELL MAD AT....

all pls people on these boards know they are fortunate.....and you aint got a diagnosed, so your even more fortunate........johnny
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Old 07-31-2013, 12:44 PM #3 (permalink)
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Default Re: I'm HELL MAD AT....

Quote:
Originally Posted by johnnyliverpool1 View Post
all pls people on these boards know they are fortunate.....and you aint got a diagnosed, so your even more fortunate........johnny
You are right Johnny,
But I'm not talking about PLSers in this fórum.... I met quiet a few in here and other fórums.. they totally Rock..!

I'm talking about the ones on TV repeating and repeating that they have ALS but in reality were diagnosed with PLS or some sort of slow progressive sclerosis... yet they go preach about how they beat "ALS" and keep living with this or that method....

AND LATER THEY START doing advertising and selling their miraculous products that can "prolong" life!

I have met people with PLS with a very slow progression that lives their lives good and are fortunate, but they don't go around telling everybody " and if they had a way to slower the disease down.. believe me they will share the info, just as Jim/Will did...
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Old 07-31-2013, 03:58 PM #4 (permalink)
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Default Re: I'm HELL MAD AT....

i think i follow your thinking, i think......johnny
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Old 07-31-2013, 04:07 PM #5 (permalink)
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Default Re: I'm HELL MAD AT....

Johnny ... Is he referring to the BBC? I've seen nothing on TV like that around here - although I'm not much for the shopping channel. Maybe that's where cures are peddled?
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Old 07-31-2013, 04:15 PM #6 (permalink)
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Default Re: I'm HELL MAD AT....

not on the beeb, am sure.......cures for sale at the pound shop, or should i say the dollar shop...johnny
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Old 07-31-2013, 07:36 PM #7 (permalink)
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Default Re: I'm HELL MAD AT....

Personally as a slow progressive pls'er I feel very very fortunate and try to do what I can for my fellow pals....I see it as my duty.
I don't like to complain about my own troubles as they seem small in comparison to others.

I don't know what tv program/advert your talking about...certainly not over here.
Here in the uk als and pls are classed as one...mnd.

I love poundland johnny...you can get some real bargains lol.
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Old 07-31-2013, 08:02 PM #8 (permalink)
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Default Re: I'm HELL MAD AT....

Hi Caroline / Jhonny,

Here in this continent we have a different story lol... As we differentiate MNDs, in PLS, ALS, etc...

For instance in latinamerica is called ELA which stands for Esclerosis Lateral Amiotrofica...
(ALS)... which has the poorest prognosis..

And here i see on TV people being "cure" of this, by scam stem cells, or for instance we see stories of PALS that have endured the disease for 20 or more years... and they claimed it was ALS, yet in reality they had a really slowly PLS or other type of dissability..

They were misdiagnosed (misteriously) maybe to advertise the product the MDs were selling...

I feel that's wrong to play with the health of people..

I think the title of the thread must be I HATE THE SCAMMERs lol sorry

Jon..
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Old 07-31-2013, 08:20 PM #9 (permalink)
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Default Re: I'm HELL MAD AT....

we all hate the scammers, me old son.......maybe you could have put it better, but no harm done . good luck with your diagnosed.......johnny.
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