PLS to ALS?

[dkcarl62]

I don't know where on this forum to ask this question, so forgive if this is the wrong place. The question is:
How many of you with ALS were first diagnosed with PLS, but your PLS progressed or "converted" (my neurologists term) to ALS?
If so, how long did it take?

Thanks for your response.

Debbie

 

[krnNdug]

I personally was not diagnosed this way, but a guy in our support group just was moved from PLS to ALS. They knew it was coming, just a matter of when. It was a couple of years for him, but he also has stage 4 emphasema (his wife's name is Debbie). There is also a lady in our group who has had PLS for 7 or 8 years. We just had group and we introduce ourselves each time so I can remember these 2. We have talked about the differences and PLS have a much longer life expectancy in general, many years longer.

Doug

 

[dkcarl62]

I am surprised that I haven't received more responses to my question. Is this something that folks don't want to talk about? Surely there are those among you that were diagnosed with PLS and later ALS. Do you feel you were misdiagnosed to start with? I get the sense that I am on "ALS-watch" by my neuro, so a discussion of this possibility is important to me.

Thanks for your understanding.

Debbie

 

[affected]

We have a member here Mike in Maine whose diagnosis was changed from PLS to ALS recently.

It doesn't always happen.

In PLS there is no LMN involvement, whereas in ALS there is both UMN and LMN.

So, in short, if someone with PLS develops LMN involvement, the diagnosis is changed.

I doubt that it is something folk here don't want to talk about. Maybe lots did not have an answer, or are just busy dealing with their own issues. Sometimes threads get overlooked for no reason other than they fall down the list as more threads are created.

I suggest you talk to your own neurologist about your concerns and ask bluntly - am I on "ALS-watch"?

 

[dkcarl62]

Thanks for your advise, Tillie. I was trying to get a feel for how often it happens. I have read its a high as 77%. I will talk to my neuro next appt. In the mean time, I will reach out to Mike in Maine to see if he'll share his story with me.

This illness give us too much time on our hands to think, ya know?

Debbie

 

[avnl]

My husband has PLS. We have worried over the same question.....answer from Dr. Fink in Ann Arbor MI, a MND specialist, if you have no LMN findings and have symptomatic for at least 8 years, you will very unlikely progress to ALS. He did not feel the need to repeat M's EMGs ( his last one was 5 yrs ago). M continues to progress, speech is hard to understand, choking, emotional lability, walker dependent and on the cusp of transitioning to a wheel chair, upper extremities starting with spasms, difficulty turning over.
I think each persons course is so different, that it becomes very hard to put labels on the process. Slow ALS or progressing PLS. Are the two illness on the same continuum, who knows. We take each loss, adapt and try to maximize our time together.

 

[dkcarl62]

Thanks for your response, avnl. I know the symptoms can be devastating, regardless of the label attached. I try to enjoy each day, but struggle to not think about the other shoe dropping.

Debbie

 

[RooRoo]

Hi Debbie
I asked the same question and got VERY few replies, as well. I don't think anyone including the M.D.s really know the answer. I have asked how they know when LMN involvement is present? I haven't really gotten a straight answer. However, since having symptoms since 2009, diagnosed in 2012, it just doesn't matter anymore to me. I'll die when I die no matter the diagnosed is and I and the neurons are helpless to do anything, but try to make life easier and less uncomfortable. So I guess I've gotten to the Acceptance stage of grief. I try to make the most of each day, but lately it hasn't been much. I can no longer talk so I spend a lot of time on my iPad communicating either by text, email, or Assistive Express.

 

[dkcarl62]

Thanks for the response, RooRoo. My neuro has said that PLS can convert to ALS, typically within 5 years. But she is concerned about my muscle atrophy, so she's shortened the time length in between visits. For me, the thought of having ALS is devastating, so I'm trying to live life not waiting for the other shoe to drop.

Debbie