PLS symptoms and waiting

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z250153

New member
Joined
Jun 26, 2016
Messages
5
Reason
DX UMND/PLS
Diagnosis
09/2015
Country
US
State
MA
City
Braintree
My neurologist gave me a "working" diagnosis of PLS last year. She has told me that I have to wait another 2-3 years before the diagnosis is officially PLS because she is looking for any LMN signs that would change the diagnosis to ALS.
Is there anyone on this forum that is playing this PLS/ALS waiting game?
Does anyone know the percent of PLS patients that progress to ALS?
Thank you,
Bob
 
Hi, Bob, search this forum for some literature and self-reports on the subject. More than half would be the consensus; some authors feel it's almost all. "Conversion" after a decade has been reported. The good news is that "UMND-dominant" ALS carries longer survival overall, even if the cards fall that way.

Best,
Laurie
 
Hi Bob-
I'm in the same boat as you. I'm 1.5 years in from first sign of toe drop/spasticity. From what I've read before, the incidence of PLS is super low - 2% to 5%? Anyhow, the longer you go without LMN signs, the less likely it will end up being ALS. And, even if you DO end up with ALS, it'll be a pretty slow progression compared to most.

Welcome to the forum- though sad to see you here.

Fiona
 
M has been symptomatic for 12 years. He was labeled PLS within 3 yrs of the start of symptoms. He has not had any lower motor neuron signs on multiple EMGs. 8 years ago he had a Baclofen pump placed for spasticity. His swallowing is deteriorating and is a candidate for a g-tube. Speech is is unintelligible, He walks with a rollator but should be contemplating a power chair. He also has maintained good pulmonary function and has retained good core strength. Alas he is progressing more noticibly in the past 2 months. Do you call his progressions slow ALS or say he continues with PLS. I think it is semantics. We are struggling a bit these days trying to adjust to what has been a hard 2016. Do a search. There are interesting comments on this topic.
Anna
 
Hello Bob
Welcome to the site.
I'm sure you will find a lot of support here.
There are a few in the same boat as you and Fiona.
All the best with slow progression.
 
Hi, Bob, search this forum for some literature and self-reports on the subject. More than half would be the consensus; some authors feel it's almost all. "Conversion" after a decade has been reported. The good news is that "UMND-dominant" ALS carries longer survival overall, even if the cards fall that way.

Best,
Laurie

Thanks for the reply, Laurie.
I'm assuming that my symptoms will progress to ALS. The waiting is the hardest part. My wife is a nurse and I know she is very concerned.
Why to I assume a future of ALS? Well, one thing I don't understand is that I have been diagnosed with flaccid/mixed dysarthria. My understanding is that flaccid dysarthria is a LMN sign. My neurologist says wait and see. She also recently asked me if I wanted to go to the ALS Clinic at Mass. General Hospital for a second opinion.
I told her that I wasn't ready for that visit yet and she replied that they share patients and they would probably just follow me as she is.
Thanks again,
Bob
 
Hi Bob-
I'm in the same boat as you. I'm 1.5 years in from first sign of toe drop/spasticity. From what I've read before, the incidence of PLS is super low - 2% to 5%? Anyhow, the longer you go without LMN signs, the less likely it will end up being ALS. And, even if you DO end up with ALS, it'll be a pretty slow progression compared to most.

Welcome to the forum- though sad to see you here.

Fiona

Hi Fiona,
It is reassuring that I found someone in the same boat!
Along with stiffness of the legs, I also have slurred speech (dysarthria) and have taken some pretty bad falls in the last 6 months.
I hope you are correct about the slow progression.
Thanks,
Bob
 
Bob, rule number one around here is
Don't Fall!!

Please take care. Falls are very serious for you.

Maybe a walking stick or rollator is in your near future?
 
Sorry to hear about MND. ALS is around 100 times more prevalent than PLS. If you first symptom was speech you can tell within 2 years. Bulbar ALS progresses quickly. I saw a stat one time and 90+% of ALS patients show LMN symptoms at 4 years and at 5 years it is in the high 90's.
 
Bob, rule number one around here is
Don't Fall!!

Please take care. Falls are very serious for you.

Maybe a walking stick or rollator is in your near future?

Thanks for the advice.
You are right - falls are not a good thing.
I broke a rib a few months ago when I fell getting out of bed.
Also, I have two total hip replacements and one total knee replacement to worry about. I know that I am not a good patient but I really try to be careful.
Thanks,
Bob
 
Bob,
I started developing symptoms about 18 months ago. My Neurologist at Cleveland Clinic has diagnosed me with a UMND and probably PLS, but said it could be 2 to 3 years before he could definitively say it was PLS and not ALS
 
I was diagnosed in Aug. of 2011. In the summary of my last visit to the ALS Clinic, the neurologist describes me as fairly stable and refers to my condition as PLS. I find it's very difficult to tell which symptoms are progression and which can be attributed to the aging process and lack of exercise.
 
Yes, I have the same problem determining what is progression and what is due to getting older.
For example, I am not sure if the cramping and stiffness in my legs is caused exclusively by PLS or are three joint implants that I have received since 2007 causing some of the problems.
 
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