Old 05-17-2018, 06:28 AM #1 (permalink)
PaulDaddy's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Camden
State: TN
Country: US
Interest: I have been diagnosed with UMND/PLS.
Posts: 2
PaulDaddy is on a distinguished road
PaulDaddy PaulDaddy is offline
New Member (Say Hi)
PaulDaddy's Avatar
Join Date: 2018
City: Camden
State: TN
Country: US
Interest: I have been diagnosed with UMND/PLS.
Posts: 2
PaulDaddy is on a distinguished road
Default Newbie

Hello Everyone!
This is my first post so bare with me. I'll spare everyone the details that took me from Aug. 2016 to now but as of now my Neurologist believes I may have PLS. I have had one MRI, 2 EMG's, several blood test and my next visit with her is Sept. 25th. I am seeing another Neurologist on June 15th for a second opinion. Walking is difficult and very slow, my right leg is the weakest, I have leg spasm in both legs, some muscle jerks, it's starting to affect my arms and I'm loosing my grip in my hands. Loose my balance a lot and I get extremely exhuasted and weak after much activity. My reflexes are extreme and I get startled easily now. Going up stairs is a chore and takes me a long time. I use to play the drums but when I hit the bass drum my foot would bounce and not stop so I've put that on hold. My emotions are crazy, I was actually mad one day and I could not stop laughing, that was so, so frustrating but I look back now and laugh about it. Starting to have issues when I drink with it going down the wrong hole and choking. Well that's me right now. I realize everyone is different but are some of ya'll have some of the similiar issues? And is there any advice anyone wants to give me? I'm open for it.
PaulDaddy is offline   Reply With QuoteReply With Quote
Old 05-17-2018, 04:22 PM #2 (permalink)
New Member
 
Join Date: 2015
City: Vancouver
State: British Columbia
Country: CA
Diagnosed: 08/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 75
Gorby is on a very distinguished road
Gorby Gorby is offline
New Member
Join Date: 2015
City: Vancouver
State: British Columbia
Country: CA
Diagnosed: 08/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 75
Gorby is on a very distinguished road
Default Re: Newbie

Ask your doctor about Neudexta for the emotional lability (uncontolled laughing). I take a combination of Neudexta and a small dose (10 mg) of Escitalopram. Together the meds are enough to make the laughing/crying manageable.
Gorby is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to Gorby For This Useful Post:
PaulDaddy (05-18-2018), ShiftKicker (05-17-2018)
Old 05-18-2018, 12:25 AM #3 (permalink)
PaulDaddy's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Camden
State: TN
Country: US
Interest: I have been diagnosed with UMND/PLS.
Posts: 2
PaulDaddy is on a distinguished road
PaulDaddy PaulDaddy is offline
New Member (Say Hi)
PaulDaddy's Avatar
Join Date: 2018
City: Camden
State: TN
Country: US
Interest: I have been diagnosed with UMND/PLS.
Posts: 2
PaulDaddy is on a distinguished road
Default Re: Newbie

Thanks Gorby, I'll discuss it on my next visit. They don't happen very often but when they do it feels a little crazy.
PaulDaddy is offline   Reply With QuoteReply With Quote
Old 05-18-2018, 01:31 AM #4 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,476
ShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant future
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,476
ShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant future
Default Re: Newbie

Welcome Paul. Sorry to see you here. My hope is that your second opinion points you away from MND of any sort. I am assuming your neuro has referred you to an ALS center for that second opinion? Particularly as PLS is even harder to diagnose than ALS. Sounds like you are on the right track and are in good hands.

You're right about everyone having different issues- but some of the typical symptoms are pretty generally shared. It's hard to give advice, unless you specify issues, such as the labilty- which gorby is spot on about with regards to the most common solution being Neudexta.

You mention stairs being an issue, and balance. Have you been seen by an occupational therapist? They can assess ability and need and possibly anticipate future needs as well. I'd write a list of the things you struggle with daily- eating, dressing, bathing, etc so you can work your way down it with an OT to see what they might suggest.

Once again, welcome to the forum- but sorry you find yourself here.
ShiftKicker is offline   Reply With QuoteReply With Quote
Reply

Tags
advice, back, balance, choking, emg, foot, mad, mri, muscle, neurologist, newbie, pls, second opinion, test, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Newbie that needs help! :) redbird Do I Have ALS? Is This ALS? 9 10-25-2014 07:29 PM
newbie! spica Welcome New Members - Say Hello 11 09-30-2010 09:58 PM
Newbie PLS Chief General Discussion About PLS 12 02-22-2010 01:18 PM
Newbie Len Hiebert General Discussion About ALS/MND 11 10-25-2009 04:37 PM
Newbie Christine General Discussion About ALS/MND 0 11-06-2003 12:50 PM


All times are GMT -5. The time now is 04:19 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016