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Ann in Boston

Member
Joined
Nov 2, 2014
Messages
18
Reason
Learn about ALS
Country
US
State
Ma
City
Somerville
Ann in Boston here. I have had sx since Aug. 2013, starting with my voice. I have trouble speaking (to the extent I now use a dry erase board), gait issues, and trouble swallowing. I use a quad cane get around until my appt 11/4 to be fitted for leg braces. I may be fitted for a palate lift. I'm not scheduled to see the PLS specialist until late March. I haven't gotten an official diagnosed.
 
Welcome Ann. Alex
 
Greetings, Ann! I'm sorry to hear of your difficulties... and even more so that you will not have the privilege of a specialist until March. I think, for us, not knowing was the most difficult of times. My hope would be that when you are diagnosed, they find that it is something that can be treated.

Jim
 
Hi Ann from another MA resident. Where are you going to be seen? I have ALS and go to MGH
 
Welcome to Heartbreak Hotel.

I can't imagine a Dr. appt months out. Are you in an HMO?
 
Welcome, Ann!

>I'm not scheduled to see the PLS specialist until late March. I haven't gotten an official diagnosed.

hoping for the best!
 
Hey Ann in Boston... welcome to the slow train called, "The PLS." It's progression is slow, it's often months in between each doctors station, it rolls along regardless to the weather, cold weather does bother many of the riders though... but as we ride along, in a weird way, we're thankful we're not riding on "The ALS" as we must always remember those who are.
The conductor may not have punched your ticket yet... but he will. Welcome.
 
The specialist is at beth israel deaconess. I am on a wait list. But I'm also asking my neuro if I can see a PLS specialist in another city.
 
Graybeard, I am on a wait list to be seen sooner. I am also asking my neuro if can see a specialist in another East Coast city.
 
I have PLS and been to tufts, MGH, BIDMC, Mass Eye and Ear, and Harvard Vanguard.
 
sloooow is sooooo good!
 
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