Father diagnosed with PLS

[Emanol]

Hello,

After two years and a half of symptoms, my father has been diagnosed with PLS. We are still quite astonished and it is hard to stomach the truth. Given that the EMG was clean, the doctor thought that this was the most likely cause for my dad's symptoms. We are starting treatment next week.

My dad is still fine. He walks with a cane most of the time but he can walk and drive well, still very independent. I am coming to the forum with some questions about PLS -how reliable are these diagnosis? What can one expect regarding the evolution of the disease? Would it be possible for this disease to develop into ALS?

Thank you, everyone, for the information and support. It is great to have this resource, especially here in Spain where it takes too long time to meet with doctors and to have access to the necessary tests.

Thank you,
Emanol

 

[lgelb]

Hi, Emanol, sorry to hear about your dad.

Yes, some "PLS" is later reclassified as ALS. The numbers reported vary widely, but as this abstract suggests, people with PLS need to be re-evaluated at intervals to see if any lower motor neuron damage has occurred.

In sum, PLS is less likely to affect breathing, speech and nutrition than is ALS, with slower progression overall.

Best,
Laurie

 

[ShiftKicker]

I am sorry to hear of your father's diagnosis, Emanol. I am glad, however, that you have received some answers and can now try to plan accordingly.

As Laurie says, a PLS diagnosis can be changed to an ALS diagnosis even years later. However, it is still usually a much slower progression. I am sure your dad's neurologist will continue to track and assess and let you know if anything changes. With regards to how your dad's disease will progress- it is different for everyone. There are some patterns, but they are not set in stone. It really depends on where symptoms started.

I am interested in your comment about your dad starting treatment next week. We don't get many people from Spain posting here- what is the treatment they are proposing?

One thing I recommend quickly is to change your "Interest" on your profile to "Family member" or "Caregiver". It helps people when seeing your posts. I am sorry you are having to be here, but I am glad the forum is here for you.

 

[billybob]

Hello, Emanol. Your father's diagnosis is similar to mine. Mayo/Jax diagnosed me with PLS in September 2014 and in September 2017 the diagnosis was changed to ALS due to sudden onset of LMN. In the interim, I had three EMGs and exams and it was interesting how they became more and more abnormal over time. At this point, all four of my limbs are involved, fingers beginning to curl, bulbar starting to sneak in, too. Still using cane and walker and fighting it like a warrior. So, yes, keep a close eye on it. Stay ahead of the game, as it were.

 

[Emanol]

An update: we have seen new doctors. Both of them think that PLS is far from confirmed. One of them thinks that MSA is the most likely cause of my dad's symptoms -and yet, for what I have read online, it is not advisable to diagnose MLS without orthostatic hypotension, which my father does not have.

As to my father, it seems that rigidity (bradykinesia) is the main problem, in addition to the gait and incontinence which might or might not be related to the disease, since it started way earlier. No swallowing problems, no slurred or unclear speech, no muscle waste, no strength loss, no breathing issues... and yet we are again in the dark, without knowing what to expect.