ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 9,220
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
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.
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.