Old 08-29-2017, 02:22 PM #1 (permalink)
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Question What Happened Here?

I know I am 100% guilty here also for not posting a lot, but what the heck happened to everyone discussing PLS? When I joined this forum in April of 2008 it was the place to be. I remember refreshing the PLS page every hour and there were new comments or topics. Now the last post was from 07/02, almost two months ago? There were regulars here that would offer and discuss great information regarding their situation and experiences. I fear that it got to the point that everyone that would Google their symptoms and would "self diagnosis" themselves with PLS would come here and ask a question, well of course that is the ultimate sin and would be run off and belittled. Even if their neuro would suggest it as a possibility they would be discredited as if having PLS is some secret society that you must join. I know PLS is a "rare disease" and everybody is different and progresses differently, so maybe everyone should go their separate ways and not confuse the situation more? I mean what the heck there is no cure what is the point of talking about it or resourcing it trying to eliminate it? Also, Facebook Groups have become more popular then back in 2008, maybe everyone migrated there. It just makes me sad to think that maybe people are avoiding joining or posting in the forum due to a stretch of people that played "know it all's" or "basically bullies" over someone asking a question. It was never meant to be a diagnosis forum above a doctors diagnosis, but darn, for those of you here that were here 9 or 10 years ago you have to admit the loss of interest in sharing information. Well, that is my rant for the day...again I admit I also have not contributed my experience as maybe I should have. But at this rate with the last post being almost two months ago and every thread being locked, what's the point in even having PLS as a category?
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Old 08-29-2017, 03:24 PM #2 (permalink)
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Default Re: What Happened Here?

I joined in 2014 and there are a lot of PALs that are no longer with us from then. This forum renews itself every 12-24 months due to the fact that we are perishable.
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Old 08-29-2017, 03:31 PM #3 (permalink)
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Default Re: What Happened Here?

Hey Kevin - try starting a topic that you would like to talk to other PLSers about?
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Old 08-29-2017, 03:44 PM #4 (permalink)
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Default Re: What Happened Here?

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I joined in 2014 and there are a lot of PALs that are no longer with us from then. This forum renews itself every 12-24 months due to the fact that we are perishable.
100% wrong....if those with PLS perish in 12-24 months then all the science behind the life expectance of Upper Motor Neuron disease is wrong. We are not that quick of a "self cleansing" society.
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Old 08-29-2017, 03:50 PM #5 (permalink)
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Default Re: What Happened Here?

Hi affected....thanks for commenting. As I stated, "I am also 100% guilty for not posting here". I did not create the thread with a topic in mind, it was created to show the deterioration of the flow of information that was once part of this forum. Simply an observation not meant to be positive or negative in any shape or form.
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Old 08-29-2017, 03:52 PM #6 (permalink)
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Default Re: What Happened Here?

I hope it draws some of the PLSers out of the woodwork, I often really enjoyed the banter in here
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Old 08-29-2017, 04:00 PM #7 (permalink)
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Default Re: What Happened Here?

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I hope it draws some of the PLSers out of the woodwork, I often really enjoyed the banter in here
Agreed!!! I think it is great when people share idea's and or progressions. I have a feeling that people become frustrated when people join just to ask a basic symptom question. Of course none of us are doctors (that I know of), but it's a fine line of someone being paranoid and someone actually asking a question because they are in the early stages. Very difficult situation to run a forum that stays focused and on topic.
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Old 08-29-2017, 05:54 PM #8 (permalink)
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Default Re: What Happened Here?

The threads lock automatically after a set period of not being used. It's not a conspiracy...
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Old 08-29-2017, 06:24 PM #9 (permalink)
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Default Re: What Happened Here?

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The threads lock automatically after a set period of not being used. It's not a conspiracy...
My point exactly...thanks so much. I know it's not a conspiracy, until this thread there were no unlocked threads. So it goes to show that the allotted time is passing on every thread without a comment or reply being made, thus closing the thread forever.
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Old 08-29-2017, 08:15 PM #10 (permalink)
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Default Re: What Happened Here?

Hi Kevin,

Just a suggestion. Maybe you should start interacting with PALS since we suffer from the same symptoms and PLS frequently turns into ALS. I hope you get some replies from PLS-diagnosed people.
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Old 08-29-2017, 08:45 PM #11 (permalink)
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Default Re: What Happened Here?

Hi Kevin-

I'm still in the PLS category, but most of my posts are ones that are not PLS specific so I post them elsewhere.

You are correct- there are many groups on FB that are more active now. You are also correct that the history in this subforum contains some pretty offside behaviour. Perhaps this subforum deserves a kick start of some sort. Is there something specific to PLS you'd like to start a conversation about? I know that there are few of us UMN people who do check in every day, but don't always post.

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Old 08-29-2017, 08:55 PM #12 (permalink)
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Default Re: What Happened Here?

I joined this group 1 1/2 years ago being under a working diagnosis of PLS. Didn't see anyone participating in anything so I joined the site on Yahoo. I was sent to my first ALS clinic last month at Kaiser. They told me at the clinic that ALS and PLS are under the same umbrella and it doesn't matter what you want to call it, it's all about the progression. I didn't get a diagnosis yet. They want me to come back every 6 moths to see my progression. They said the first appointment was taking baselines for breathing and strength and so on. There are people on the Yahoo site that have had PLS 15+ years and still getting by with use of a walker. There are others that have morphed to ALS. I like many others came here hoping to hears people with PLS's stories and probably for a little hope because we all know with ALS no one can get hope from anyone. My neurologist told me if I have ALS I have about 2 years and if I have PLS I probably have about eight years til I expire. Not finding much hope there.
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Old 08-30-2017, 11:25 AM #13 (permalink)
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Default Re: What Happened Here?

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I joined this group 1 1/2 years ago being under a working diagnosis of PLS. Didn't see anyone participating in anything so I joined the site on Yahoo. I was sent to my first ALS clinic last month at Kaiser. They told me at the clinic that ALS and PLS are under the same umbrella and it doesn't matter what you want to call it, it's all about the progression. I didn't get a diagnosis yet. They want me to come back every 6 moths to see my progression. They said the first appointment was taking baselines for breathing and strength and so on. There are people on the Yahoo site that have had PLS 15+ years and still getting by with use of a walker. There are others that have morphed to ALS. I like many others came here hoping to hears people with PLS's stories and probably for a little hope because we all know with ALS no one can get hope from anyone. My neurologist told me if I have ALS I have about 2 years and if I have PLS I probably have about eight years til I expire. Not finding much hope there.
From my non-professional opinion I do agree when they say ALS & PLS are under the same umbrella, of course just a matter of "no" lower motor neurons involved. So with that being said I believe that "time" & "an EMG" are the two best factors in coming to a diagnosis. Did you have any EMG's done and if you did, did it show any Lower involvement? I had four in my first three years of being diagnosed. I don't mean to disagree with your neurologist statement regarding "having eight years" with PLS, but I do (I'm sorry and I know I'm not a doctor). I personally have not seen any official statement that PLS or any other "only" Upper Motor Neuron disease has an average of eight years. Not to say there isn't, but in 10 years I haven't seen any studies regarding the life expectancy of some with only Upper Motor Neurons involved. Just as I typed this I quickly Google "life expectancy of someone with primary lateral sclerosis" and to just grab a quote from the Mayo Clinic, "Adult PLS isn't thought to shorten life expectancy, but it may gradually affect the quality of your life as more muscles become disabled.".....so I hope this helps put your mind at ease if you are officially diagnosed with PLS and have about three years of clean EMG's.
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Old 08-30-2017, 04:03 PM #14 (permalink)
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Default Re: What Happened Here?

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From my non-professional opinion I do agree when they say ALS & PLS are under the same umbrella, of course just a matter of "no" lower motor neurons involved. So with that being said I believe that "time" & "an EMG" are the two best factors in coming to a diagnosis. Did you have any EMG's done and if you did, did it show any Lower involvement? I had four in my first three years of being diagnosed. I don't mean to disagree with your neurologist statement regarding "having eight years" with PLS, but I do (I'm sorry and I know I'm not a doctor). I personally have not seen any official statement that PLS or any other "only" Upper Motor Neuron disease has an average of eight years. Not to say there isn't, but in 10 years I haven't seen any studies regarding the life expectancy of some with only Upper Motor Neurons involved. Just as I typed this I quickly Google "life expectancy of someone with primary lateral sclerosis" and to just grab a quote from the Mayo Clinic, "Adult PLS isn't thought to shorten life expectancy, but it may gradually affect the quality of your life as more muscles become disabled.".....so I hope this helps put your mind at ease if you are officially diagnosed with PLS and have about three years of clean EMG's.
Thank you for your reply, yes I have had 2 emg tests a year apart. Both were good. Although I do have signs of muscle atrophy. I Have brisk reflexes, twitching, positive babinski and balance problems. Hold on to things when I walk. PT called me a furniture walker. A few problems swallowing but only 3 times in the last year. Weakness lifting over my head. Takes 2 hands to lift the milk jug out of the fridge. Also having some muscle cramping.
I think when my neurologist said 8 years lifespan with PLS he was referring to that's the average time when people morph to ALS. He said the majority of people who are first diagnosed with PLS end up morphing to ALS. He said real PLS is very very rare. Under 2,000 documented cases in the entire US. So yes if you have real PLS your lifespan could be normal. But more likely than not at some point it will turn to ALS.
I will just have to wait and see how it progresses. That's the hard part to just wait and see and have to just live day by day seeing what tomorrow brings. They put me on a anxiety medication. That helps a lot. God Bless
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Old 08-30-2017, 04:20 PM #15 (permalink)
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Default Re: What Happened Here?

Thestratman56...yeah keep your chin up if your EMG's are looking good. I have all the same symptoms that you listed (and then some), even worse with the swallowing. And I am going on 10 years now. Sure there are some stretches where I don't notice anything new, then all of a sudden I start to notice minor things I didn't before. The main thing is not to panic and get over excited, I take my anxiety medication also to keep me calm.
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