Newly Diagnosed

[TippiLeigh]

Just wanted to say hello. After a long time of testing/investigation, etc, my neurologist told me today that I have PLS. I’ve already thought for a while now that is what it was, but it was strangely a relief to hear it out of my doctor’s mouth. The unknown is definitely worse. He started me on Baclofen today because of my bad spasticity and wants me to go UCSF for a final diagnosis and go over other treatments as our local area is very limited in resources. Anywho, hello!

 

[KarenNWendyn]

Sorry to hear you have a verdict in the motor neuron disease group. I agree with another opinion from a university medical center.

 

[Nikki J]

Glad you at least have an answer. And if you must have an mnd PLS is preferable to ALS but I know you would prefer neither!

good that you are going to UCSF.

sorry you are joining us

 

[KimT]

Welcome but sorry you're here.

Good for going to UCSF.

 

[TippiLeigh]

We were really hoping for MS. (So funny to say that you hope you have MS, but I know that it has much better treatment options available currently. Unfortunately all my testing pointed away from MS) BUT, yes, PLS is a much better diagnosis than ALS. On a bright note, I saw a video not too long ago from Dr. Misumoto about some recent progress they’ve made with PLS. It makes me hopeful that good help isn’t too far away.

 

[TippiLeigh]

Here is the video: