diagnosed

[tabney]

Hello everyone. I have received a diagnosed. PLS. This is good as I do not have ALS. I cannot find a forum anywhere where you can discuss PLS. Is anyone aware of a forum I can join? My neurologists is 85 percent sure of this diagnosed. I am having another EMG in three months to completely rule out ALS. I am unsure of what to do next. I have limitations already but am still able to do my job. I am scared of the future but ready to go ahead full steam and deal with whatever when it arrives. Not going to quit working until I have to and not going to let this get me. There is just so many unknowns with this diagnosed.
You know you have this weakness......you know it will not improve....stretching and physical therapy can help......alot of questions and very few answers. If anyone is aware of where I can get some imformation, I would be very grateful. I have found the typical websites but want to dig deeper.:?

 

[Al]

Hi tabney. We do have a forum topic dedicated to PLS but as you are aware it is a bit rare so there are not a lot of people on that particular forum but there are a few. Hopefully you'll find what you need there.
AL.

 

[John1]

Hi Tabney,

I don't know where you are located (you might want to add it to your profile under "User CP" because it makes it much easier to answer questions) but there is a group being organized now centred in the UK but serving a world-wide membership that is set up to address concerns of people with slow progressing ALS or PLS. You can reach the umbrella organization at [email protected]; the contact person is Jean.

Also check your private message box.

John

 

[John1]

Bump for Tabney.