Newly Diagnosed

TippiLeigh

Forum Supporter
Member
Joined
Jun 13, 2020
Messages
14
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
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

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,755
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
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

Moderator
Joined
Mar 22, 2012
Messages
8,920
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
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

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,832
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Welcome but sorry you're here.

Good for going to UCSF.
 

TippiLeigh

Forum Supporter
Member
Joined
Jun 13, 2020
Messages
14
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
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

Forum Supporter
Member
Joined
Jun 13, 2020
Messages
14
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
Here is the video:

 
Top