New PLS

[byrneka]

Hi all,

I posted a while back about my symptoms and concerns that it was PLS. Unfortunately, it appears I am that very very rare 27 year old with PLS. Of course, nothing is official for a few years with repeat EMGs, but that is the running differential after a year of symptoms, months of testing, and worsening exams.

The main reason I am writing this is to get suggestions as to where to get a second opinion, which I plan to pursue. I live in Philadelphia and my care is currently done through Penn Medicine. I know there are a ton of great places out there (Mayo, John's Hopkins), but I was just hoping for some specific suggestions from those who have had positive experiences and some advice on how you went about getting an appointment.

Thanks so much!

 

[ShiftKicker]

Hi byrneka-

So sorry to welcome you here. You'll find this forum and excellent resource and source for support.

I'll leave the clinic recommendations to folks who reside in the US and know such things. It might be helpful to know where you were diagnosed, so you aren't getting recommendations for that doctor/clinic.

Prev posts here: Differentials

 

[Nikki J]

Dr Heiman Patterson at Temple if you were at UPenn. Given the extreme rarity I would consider 3 neuromuscular opinions Hopkins is not that far Mass General is the best

sorry you are dealing with this

 

[KimT]

I can vouch for Johns Hopkins. I got my second there after Mayo Clinic.

 

[lgelb]

If you did not see Dr. Heiman Patterson, second that, and she's in your city so that would give you two options for ongoing care.

 

[Jan W]

I also have PLS and was diagnosed (finally) at Johns Hopkins after seeing 3 other neuros. I have been happy with my care thus far.....I live in North East PA so it is a bit of a hike for me to get there. Docs are pretty responsive through their portal. Best of luck to you.