Old 02-25-2017, 03:56 PM #1 (permalink)
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Default My Doctor says I have PLS

I was diagnosed with ALS back in 2001. They thought it might be the PLS form of it and after a few years confirmed to me that it was. I would like to know what other people are like who are living with this condition called PLS form of ALS. I am now 16 years with this. I have been quadriplegic now for about 12 years. Have been on bibab at night for some 8 years. Have never had the muscle fasciculations so typical of ALS although they initially thought they saw them on my tongue. Started to exercise in the pool 14 yrs ago. This very much has turned out to be directly impacting my health and longevity. It is maintaining my strength of my breathing. I blow between 1.75 to 2 liters of air which is about 50% of what I should be capable of. This hasn't changed for years. Is there anyone else out there who can tell me about their life dealing with PLS?
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Old 02-25-2017, 06:35 PM #2 (permalink)
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Default Re: My Doctor says I have PLS

Hi Doug-

I'm a complete newbie compared to you. I'm in my 3rd year of possible PLS. I am mildly impaired compared to your experience. I am very glad exercise has worked to improve your health and maintain strength with your breathing.

Do you go to a therapy pool (which is usually warmer), or do you exercise in a regular swimming pool?
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Old 02-25-2017, 06:40 PM #3 (permalink)
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Default Re: My Doctor says I have PLS

This has been hinted at recently with my husband, who was diagnosed with ALS on 6/30/16 and is having a new EMG on March 17th due to his slow progression and his lack of hyper reflexes. In fact his reflexes are slow. He walks with a cane, eats and speaks normally and his primary weakness to date is on his left side, hand and foot at this time. He is swimming/doing pool exercises now. He probably just has an atypical ALS, but thought I would chime in in case he does turn out to have LMN.

It has been said that LMN and PLS are "just an ALS variation" or it "always converts to ALS". Perhaps, but the MUCH slower progression is noteworthy for sure, and you are evidence of that I think.
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Old 02-25-2017, 11:36 PM #4 (permalink)
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Default Re: My Doctor says I have PLS

Lenore, "LMN" [by which I presume you mean LMN-dominant disease] and PLS are not exactly two sides of a coin. Everyone with LMN-dominant ALS will likely die of it. There used to be an assumption that LMND is truly different from ALS, and it's therefore called PMA, but that theory did not stand the test of time, to the extent that the prognosis is similar. People with true PLS may indeed live long enough to die of something else, since their breathing is less severely affected.

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Old 02-26-2017, 01:08 AM #5 (permalink)
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Default Re: My Doctor says I have PLS

My wife was diagnosed 2 years ago with PBP and probable slow progression Bulbar Onset. 3 weeks ago went to a new neuro and she thought she had PLS because of slow progression. She lost the ability to speak about four years ago and had difficulty swallowing which has progressed slowly. She has difficulty walking and falls on a regular basis. She has very limited use of right hand and the left is getting worse.

The reason for PLS diagnosis is that she still has strength and flexibility in arms and legs with very little wasting of muscles. Since my wife doesn't want any more testing and no PEG or breathing aids, the label that is put on her disease is irrelevant. We take one day at a time and hope for the best.
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Old 02-26-2017, 09:47 AM #6 (permalink)
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Default Re: My Doctor says I have PLS

Laurie, I know there was recently some talk that virtually ALL MNDS were essentially ALS in the end, with PLS being the best case scenario and the least likely to "flip" into ALS.

The LMN prognosis, even assuming it is eventually fatal is still significantly better in that it has a TEN year life expectancy and an overall slower course. So while it may well be "just" a slower moving ALS, it is still significantly different in course. Our Doctor, an ALS Clinic Director for the U of M discussed this with us at some length. To some degree, the jury is still out on if it is the same thing as ALS, apparently.

My purpose was to offer our prospective on dealing possibly with a variant, not to say PLS was the same thing. I have heard of people with PLS diagnosis living for 25 years and indeed dying of something else.
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Old 02-26-2017, 10:28 AM #7 (permalink)
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Default Re: My Doctor says I have PLS

This may be of interest. http://www.medscape.com/viewarticle/720267. You probably need to register to read it. It is free and I don't think you have to claim a professional medical license

Sorry OP to continue the hijack
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Old 02-26-2017, 10:44 AM #8 (permalink)
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Default Re: My Doctor says I have PLS

Yes, I have hijacked for sure. I am sorry.
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Old 02-26-2017, 04:21 PM #9 (permalink)
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Default Re: My Doctor says I have PLS

First, as I have posted so many times before, ALS is a rare disease and PLS is the rare of rare.

An initial PLS diagnosis supposedly does not indicate a dysfunction/damage of the Lower Motor Neurons… so often written. PLS is an Upper Motor Neuron dysfunction. You can read all the articles about PLS then end up not sure of what you thought you knew, or are experiencing or have read an hour earlier. Some articles say the presence of hyper reflexes, clonus is an indicator of PLS, then you read another study will say the lack of reflexes could also be an indicator.

The most reliable indicators of PLS are the Babinski and Hoffman tests.

Ok HowDoug, you asked about how others have experienced PLS… my experience started eight years ago + with a weak left leg and a limp. My wife’s Ortho doctor during one of her visits ask me off hand why I was limping and I just casually said my left leg was weak. He suggested I see him. Making a long story short… after two appointments with him he felt I may have Chiari Malformation Syndrome and referred me to a Brain and Spine Specialist. Well, then he referred me to a Neurologist and I can’t count the number of appointments I went through with him over years. Then, I got the confirmed diagnosis, diagnostic code and then they set me up for appointments at the ALS Clinic.

Ok, wrote all that to say this concerning PLS eventually becoming ALS as others have posted… possibly. OK, I quit asking questions (and Google) a few years ago, maybe being in denial of all this but (but) … I’m beginning to wonder if they (the Neuros) know something they aren’t telling me (and maybe because I’m not asking). I’ve learned I did not have a clean EMG last time but it was not a positive indicator of ALS. I have all the indications of “Split Hand Syndrome” which is/was once considered an early indicator of ALS. I’ve lost 50 pounds (from 239). I’ve gone from a cane to a wheel walker with brakes which I fought as hard as I could. I am at max oral dosage of Baclofen and fortunately no side effects. I’ve read many people who go to ALS clinic go once every six months… I’ve been rescheduled for just two months after my last clinic.

This Forum is a good thing to share your experiences and read the experiences of others but… no one (that we may know of) posting here is a Neurologist. I know some Neuros read this Forum in their spare time (maybe yours too!) But, there are some very knowledgeable Moderators and members here who can share great info with you

So, welcome to the most controversial of MNDs... PLS. Hope to read more of your posts

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Old 02-27-2017, 03:06 PM #10 (permalink)
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Default Re: My Doctor says I have PLS

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Hi Doug-

I'm a complete newbie compared to you. I'm in my 3rd year of possible PLS. I am mildly impaired compared to your experience. I am very glad exercise has worked to improve your health and maintain strength with your breathing.

Do you go to a therapy pool (which is usually warmer), or do you exercise in a regular swimming pool?
I go to a therapy pool for warmer water as I seize up in a regular pool. The kiddies pool works though. It is getting to be a real struggle to get any movement at all in any pool anymore though.
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Old 02-27-2017, 03:28 PM #11 (permalink)
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Default Re: My Doctor says I have PLS

My ALS specialist assures me I am dealing with ALS. Basically she said they would have to biopsy the base of my brain to confirm. My neurons of my spine seem to still be ok as I can get my limbs to move a bit in water and exercise and maintain them somewhat. My big problem is my lungs. Was sick last winter and missed 2 months from the pool. Couldn't cough well enough to get rid of the phloem. Finally cleared with antibiotics. Ended up being on bipap 24/7. Was very low lung volume. But when I finally got back to the pool the effect was spectacular. I am ever so thankful.
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Old 02-27-2017, 04:19 PM #12 (permalink)
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Default Re: My Doctor says I have PLS

Thanks for all your info. Mine was a very rapid progression at first. Was quadriplegic after just a couple years. And my lung volume likewise rapidly declined. Like with ALS I was heading to death's door till I started pool exercise and have pretty well held the status quo since then. Don't seem to really fit either ALS or PLS categories. Just know I really struggle to breathe if I miss going to the pool for any extended time. I know I went through 3 emgs with 5 different neuron specialists and 2 MRI before after 3 yrs they said look this is not MS. We think you have nerve degeneration in the base of your brain but we don't want to biopsy to confirm.
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Old 02-27-2017, 07:01 PM #13 (permalink)
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Default Re: My Doctor says I have PLS

The mystery level of neurological conditions, basically all of them is just so frustrating. I question just how well any of them can be put into distinct catagories. Technically, Steven Hawkin has the same condition as the majority of people on this site. Many many more questions than answers.
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Old 03-01-2017, 03:01 PM #14 (permalink)
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Default Re: My Doctor says I have PLS

As we here in the PLS sub-Forum write of our experiences, struggles and difficulties lets always remember those who are enduring life with ALS. And... their caregivers, who endure to the end and live on with the loss and then just memories. Hopefully, they stay here and contribute with their first hand experiences. But... what we PLS'ers endure and experience has it's place here for discussion.

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Old 03-01-2017, 05:41 PM #15 (permalink)
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Default Re: My Doctor says I have PLS

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As we here in the PLS sub-Forum write of our experiences, struggles and difficulties lets always remember those who are enduring life with ALS. And... their caregivers, who endure to the end and live on with the loss and then just memories. Hopefully, they stay here and contribute with their first hand experiences. But... what we PLS'ers endure and experience has it's place here for discussion.
Thanks Al. Yes I am ever so thankful this disease has affected me the way it has. With full blown ALS you haven't a chance to do anything about it. I know. I've seen so many of my friends wither away before my eyes, and I've had the luxury of being able to exercise and maintain myself. I thank God everyday day for his gracious gift of life he has granted me.
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