Pls?

[kedevlin23]

Anyone here start with a diagnosis of PLS first?

My Dad's neuro is telling him that he has PLS, because the degeration is starting with his lower limbs. Of course PLS leads to full blown ALS, I was just wondering if anyone had experience with PLS - ALS?

[joelc]

PLS does not always lead to ALS.

[kedevlin23]

Originally Posted by joelc

PLS does not always lead to ALS.

Really? I guess I was misinformed....

[John1]

As Joel says, a diagnosis of PLS does not always lead to ALS. In fact, if I understand the disease correctly, PLS does not ever lead to ALS. The problem is in getting a correct diagnosis. Neurologists are reluctant to diagnose PLS, not only because of its extreme rarity (estimates of only 1 in 10,000,000 people are diagnosed each year), but in the early stages ALS and PLS may manifest with identical symptoms. Only time will tell which disease a patient has. According to The Packard ALS Center at Johns Hopkins University, most clinicians want to wait at least three years after a preliminary diagnosis to give a more definitive diagnosis.

Read more about PLS here:
About PLS

[olly]

hi.
i have had pls 10yrs.
pls is a umn disease were as als effects both umn and lmn's.
a neuro will wait 3-5yrs before giving a definate dx of pls,in this time they wait to see if any lmn signs develop.
umn symptoms are........spasms,spasticity,stiffness,c lonus,myoclonus and muscle weakness(not to the same extent as in total paralysis seen in als)
like als in pls it can start as limb onset(usually lower) or bulbar onset.
prognosis is reported as 20-25yrs from onset(mean age onset around 50yrs)giving a normal life span. though in younger onset like myself(age 31yrs)it can be considered life shortning.
approx half of those thought to have pls go onto be dx with als after developing lmn signs/symptoms.
hope this helps

[Zaphoon]

Olly, good stuff but you scare me with your quote of 50% of PLS'ers going on to develop ALS. I've read that same statistic. The V.A. has sent me paperwork treating me as if I already have ALS.

I concur with Olly in that PLS may start in the legs, the arms or in the bulbar region.

I have PLS, so I am told. As Olly stated, a hard diagnosis of PLS is usually given after a 5 year "wait and see" period. In some cases, ALS starts with only upper motor neuron death. It can take up 3 to 5 years for lower motor neuron death to become evident if it indeed is ALS.

As mentioned before, PLS is extremely rare compared to ALS. So, as in my case, PLS can be considered a differential diagnosis until it becomes clear that it is going to stay that way. Kind of a tease, if you ask me.

A big difference, physically, between ALS and PLS is muscle atrophy.

Zaphoon

[icecreamlady]

I was diagnosed with PLS in June. I am in the process of getting diagnosed with ALS.
I go Monday for a EMG / NCS. Things have changed since June, my breathing has now been affected. I am on Bipap/Avap at night and during the day when I need it. I have had other changes too.

Everyone is different, just pray for the best...

Lora

No fear -- Just faith

[kedevlin23]

thank you everyone for your information. i appreciate it.

[Big Mike]

The distinction between classical ALS and PLS is not always so black and white. There is a gray area between PLS and ALS called UMN dominant ALS. Some of us have that variant of the disease.