Old 09-01-2017, 05:50 PM #1 (permalink)
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Default PLS and ALS

Hello,

I just received my ALS diagnosis from the Mayo but the wording is a bit confusing.

Diagnosis: Given and that she has subtle lower motor neuron involvement she meets el Escorial criteria for clinically possible ALS, but her phenotype is more consistent with PLS. At this time I hope that her disease will continue to track in a PLS like fashion and that she will not developed more significant lower motor involvement which often happens.

On my Mayo paperwork, it says ALS and PLS. Has this happened to anyone else?
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Old 09-01-2017, 06:16 PM #2 (permalink)
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Default Re: PLS and ALS

Hi and welcome, andirai,

I'm still in the grey for this too. I'm working under the assumption I have PLS til they tell me otherwise. I have another year and a bit to go before the doctor will sign off on PLS for sure. While there are some things that are only specific to PLS (see the weight conversation on this subforum) please don't feel bound to posting just here if you have questions.

Welcome to the forum. Sorry you are here. You are amongst friends.

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Old 09-01-2017, 09:09 PM #3 (permalink)
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Default Re: PLS and ALS

Andirai, I am under a working diagnosis of PLS with the possibility it's ALS. The doctors seem to be afraid to just say you have motor neuron diesease and we will watch it to see if it's UMN or LMN dominate as it progresses. I also heard some clinics call PLS UMN dominant ALS. Everybody has told me it really doesn't matter what you call it it's all about the progression. I hope your progression is very slow. I think that's what everybody hopes for the most.
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Old 09-01-2017, 09:10 PM #4 (permalink)
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Default Re: PLS and ALS

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Hi and welcome, andirai,

I'm still in the grey for this too. I'm working under the assumption I have PLS til they tell me otherwise. I have another year and a bit to go before the doctor will sign off on PLS for sure. While there are some things that are only specific to PLS (see the weight conversation on this subforum) please don't feel bound to posting just here if you have questions.

Welcome to the forum. Sorry you are here. You are amongst friends.

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Thank you...how long have you been waiting for the final diagnosis?
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Old 09-01-2017, 09:22 PM #5 (permalink)
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Default Re: PLS and ALS

I found myself with a working diagnosis of MND, "likely" PLS in July 2015. I'd been seeing doctors for weird symptoms for about a year before that. I have yet another emg in November of this year to check for further LMN indications. So I am on year 3 of not knowing for sure, but I find myself weirdly calm about the whole thing now. I couldn't live with the anxiety dialed to 11 all the time and just worked on dealing with symptoms as they came and making sure I get a decent sleep each night.

(*frankly, it was just a relief for a doctor to tell me I had an actual disease and I wasn't just depressed and/or making it up.)
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Old 09-02-2017, 01:54 PM #6 (permalink)
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Default Re: PLS and ALS

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Andirai, I am under a working diagnosis of PLS with the possibility it's ALS. The doctors seem to be afraid to just say you have motor neuron diesease and we will watch it to see if it's UMN or LMN dominate as it progresses. I also heard some clinics call PLS UMN dominant ALS. Everybody has told me it really doesn't matter what you call it it's all about the progression. I hope your progression is very slow. I think that's what everybody hopes for the most.
Thank you...slow seems like the very best option for a horrible disease.
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Old 09-02-2017, 01:57 PM #7 (permalink)
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Default Re: PLS and ALS

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I found myself with a working diagnosis of MND, "likely" PLS in July 2015. I'd been seeing doctors for weird symptoms for about a year before that. I have yet another emg in November of this year to check for further LMN indications. So I am on year 3 of not knowing for sure, but I find myself weirdly calm about the whole thing now. I couldn't live with the anxiety dialed to 11 all the time and just worked on dealing with symptoms as they came and making sure I get a decent sleep each night.

(*frankly, it was just a relief for a doctor to tell me I had an actual disease and I wasn't just depressed and/or making it up.)
It is weird but I too felt relief! MND is such a rare thing that most people cannot comprehend it. I am just taking it one wobbly step at a time
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Old 09-02-2017, 08:56 PM #8 (permalink)
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Default Re: PLS and ALS

ALS can appear as PLS in the early years. Usually by year 4 LMN symptoms appear in 90%+ of the cases. Some neuros use 5 years to be save. I've only heard of one case of LMN symptoms appearing at year 7. PLS is incredibly rare. Only about 50 people get it a year in the US. ALS is 100 times more prevalent than PLS. I have Bulbar PLS (speech first). Bulbar PLS is a rare form of PLS. Bulbar ALS is very aggressive so after 2 years with slow progression they declared it PLS.
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Old 09-03-2017, 12:55 PM #9 (permalink)
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ALS can appear as PLS in the early years. Usually by year 4 LMN symptoms appear in 90%+ of the cases. Some neuros use 5 years to be save. I've only heard of one case of LMN symptoms appearing at year 7. PLS is incredibly rare. Only about 50 people get it a year in the US. ALS is 100 times more prevalent than PLS. I have Bulbar PLS (speech first). Bulbar PLS is a rare form of PLS. Bulbar ALS is very aggressive so after 2 years with slow progression they declared it PLS.
Interesting....my Top London Neuro, said PLS is far more common than people think. The 90% figure is not what I have been seeing in all my trawling research. I guess it depends where you look,some articles even suggest normal life span for some.Even at local level I have been told by my neuro physio that she has a couple of ladies with PLS would have been around very many years. So this is somewhat encouraging.
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Old 09-03-2017, 01:02 PM #10 (permalink)
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Default Re: PLS and ALS

Sorry forgot to say, welcome Andirai. I agree with Shiftkicker, I am finding that it mentally it gets easier for me as time goes on. Each day I just do the very best I can, delighted if I can achieve my daily goals! Subtle daily changes remind me to appreciate each day with what I can do, looking forward not back.
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Old 09-03-2017, 01:18 PM #11 (permalink)
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Default Re: PLS and ALS

Hey Bill... long time no read.

I now have a favorite saying, "Nothing stays the same."

I agree with a lot of what you wrote but... just over the past 5 years diagnosis of MND/PLS has improved greatly. More and more Neurologists are recognizing PLS where previously one side of the debate prevailed. Now... the other side of the debate seems to be prevailing and more and more Neurologists are coming around.

Just within the VA (Veterans Admin) the numbers are climbing.

Again, "Nothing stays the same." I believe the numbers are climbing and diagnosis is coming sooner with the improvements in data and recognition. Even the ALS numbers are beginning to increase. (Maybe as late Baby Boomers are adding to it.)
And... many years ago people died from ALS without ever getting a diagnosis.

Hope you are doing "Ok".
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Old 09-08-2017, 11:54 AM #12 (permalink)
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Default Re: PLS and ALS

Hey! I'm one of those extremely lucky people who was originally diagnosed (based on observation only at that point) with ALS and sent to another neuro specialist who then diagnosed me with PLS after further diagnostic testing. The original neurosurgeon does NOT recognize them as two separate diseases, but my current specialist does, and I cling to that!!!! At my last round of testing, he actually said "I did not want to come in here today" which led me to think he's expecting it to become ALS in the future( testing did not show lower motor neuron involvement at that point). I'm now scheduled for another round (down to annually from every other year) of testing, and I know they are not as optimistic this time around. We shall see. We shall see.
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