How many PLS'ers are on the forum?

[ShiftKicker]

Al, I was just speaking to one of my doctors about the official numbers on PLS and the seeming larger and very active PLS community I have found online. I don't think there is any requirements for doctors to report numbers, nor a central place in which to report it. If there is, I'd love to know! Anyhow, my personal feeling is the numbers are not accurate. It must be a combination of lack of "definite" diagnosis for so many (for example, the recent mention on another thread about some doctors mis-identifying dystonia as spasticity), the idea that many with UMN disease appear to slide into ALS at a later date, and a reluctance on the part of many doctors to say outright "You have PLS". 1-3% of all MND seems low.
Anyhow, though it's not usually the goal for forum threads to wander so wildly off topic, sometimes it's interesting to see how conversations develop. This one has actually prompted me to start another thread re:breathing difficulties experienced by those with spasticity.

 

[Tractor Boy]

Fiona, I think a lot of the disconnect on the number of PLSers comes from compassionate doctors in the US classifying PLS as ALS. Although (in my opinion) PLS is as debilitating as ALS, the medical community nor the government recognizes PLS as fatal. Therefore, the docs classify as ALS so we (too) can get the needed social security disability benefits and medical care required. Just my take. TB

 

[billbell52]

I have read 4 studies on PLS and it varies from .8% to 2% of ALS patients. All the studies involved ALS clinics. That comes to about 35 to 70 new patients a year. I go to the MDA/ALS clinic at UT Southwestern. I asked how many PLS patients they have and my neuro indicated a handful (<10) but he said that included people from as far away as Oklahoma, Arkansas and all of North Texas. I haven't really counted but it seems like less than 1 new PLS patient joins a month. This all seems consistent with the stats.

 

[Clearwater AL]

Not to further quibble about the numbers but just an added point. There is a large Neurological Center in Greensboro NC that has more than one Neuro who are very qualified to treat and follow up ALS patients and PLS patients. Winston-Salem has one, other large cities have them too that are not recognized by ALSA. Many ALS and PLS patients do not go to "ALS Clinics" for several reasons (travel hardship for just one.) * I believe one our members here, who is an ALS member, wrote he no longer goes and is being cared for by his regular Neuro. Again, not to quibble... these studies get their numbers from ALS Clinics.
There are hundreds of Neurological Centers and hundreds of Neurologists who are very qualified to care for ALS and PLS patients that are not surveyed. And... these offices do communicate with ALS Clinics and they attend conferences held by renown Neuros like the famous one at Duke. The recent unexplainable number of Veterans probably go to the VA.
I wish ALSA would lobby CDC to find a way to at least have ALS and PLS reported. And... maybe all MNDs. I can't think of anyone who would be hurt by it.

 

[lgelb]

That reporting, going beyond "ALS clinics," which many of us stop attending at some point, is being attempted through the ALS Registry. Its first full ms with numbers is here. However, they do not include PLS as such, which I agree is short-sighted but related to legalisms/territory.

 

[Nikki J]

Rare disease registry accepts PLS registrations. Voluntary and not that well known but worth standing up ( figuratively) to be countrd
https://www.alsforums.com/forum/general-discussion-about-pls/29012-rare-disease-registry.html

 

[Trippy]

Hi Fiona,

I'm still in the PLS category. Diagnosed by John Hopkins MND specialist two years ago and again this past fall at Strong hospital in Rochester after another another normal EMG. First limb symptoms approximately 3.5 years ago, but I think it all started 6 years ago after a weird 3 week episode of flu-like symptoms (but not the flu)--fever for a couple days and then pain and inflammation in my joints so that I couldn't even walk or pull on a shirt--sort of an immune system reaction. After this I started losing muscle mass in my thighs and butt and noticed decreased energy.

Kathy