Info you would have wanted in a PLS forum sticky

[seek]

Hi I just joined the group and looking for some background information for my family on PLS and which medical institutions and doctor/scientist who seem to be doing the most work in seeking relief for those diagnosed with PLS. Also has anyone heard of what effect interferon has and or HGH? Thanks:?:

 

[seek]

Believe there are no PROVEN remedies. Some work for some but not others. It's been said before, each PALS is different.

I do supplements with success and no scripts other than azilect for ALS. Many have no success supplements.

Which supplements seem to give you the most benefit.

 

[Tokahfang]

Research and care for those with PLS comes from two sources, basically:

ALS-centric groups and places: local ALS clinics, ALSA chapters (some do, some don't accept PLS patients), etc
Spastic para/quadriplegia-centric groups and places: Spastic Paraplegia Foundation, etc

I'll write this up better for the sticky, but basically some docs look at PLS as a lesser form of ALS, some view it as a greater and less genetic form of HSP. This is true of researchers as well as clinical physicians. Both are pulling for us, and the symptomatic treatments are the same regardless. So which you go to only matters if you need to get help from a government organization like the VA that will give much better benefits to someone with a PLS (a form of ALS) diagnosis rather than PLS (a form of spastic plegia).

So PLS isn't just an orphan disease in the traditional sense of the term, it is an orphan whose adoptive parents have weird custody agreement!

For friends and family, I think the SPF's run down is a pretty good resource:

PLS « SP Foundation SP Foundation

 

[billbell52]

What I found useful is a list of papers on PLS. My doctor who diagnosed my PLS had written a paper I found helpful. Mary Floeter wrote a good paper on PLS progression. I once created a short email that described PLS in simple terms. I sent it to my friends so they knew what was going on with me.