Old 08-21-2012, 04:44 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: Frederick
State: Maryland
Country: US
Diagnosed: 06/1994
Interest: I have been diagnosed with UMND/PLS.
Posts: 2
juvi plser is on a distinguished road
juvi plser juvi plser is offline
New Member (Say Hi)
Join Date: 2012
City: Frederick
State: Maryland
Country: US
Diagnosed: 06/1994
Interest: I have been diagnosed with UMND/PLS.
Posts: 2
juvi plser is on a distinguished road
Default Any hope for a cure? or maybe even remission?

Hi,

I'm new to this board. I'm 43 years old and have had PLS since I was about 8. I refer to PLS as my life sentence as its been a good 35 years since I have had a normal gait, balance, etc . I'm married to a very loving and helpful husband and we have 2 children together. He, nor our kids, have ever seen me walk properly. My diagnosis has flip flopped from PLS to PPMS and now back to PLS. My question to this board is:

What is it going to take to get qualitative research where we can get some relief?

I exercise every day for as long as I can and I'm scared to death not to. I wear Bioness devices on both legs, take Nuvigil, take multivitamins as I am sure all you do too to lessen your symptoms.

I understand PLS is rare. I understand some physicians believe PLS becomes ALS. But someone somewhere MUST have an understanding on how it works and how to make it go away.

Does anybody know of anything that provides relief from this dispicable disease? I am done with this it. I'm ready to start living my life and it will not let me.

Thanks!
juvi plser is offline  
Old 08-21-2012, 06:31 PM #2 (permalink)
Member
 
Join Date: 2011
City: britain
State: moved back to blighty
Country: uk
Interest: dia with umn syndrome
Posts: 490
johnnyliverpool1 is on a distinguished road
johnnyliverpool1 johnnyliverpool1 is offline
Member
Join Date: 2011
City: britain
State: moved back to blighty
Country: uk
Interest: dia with umn syndrome
Posts: 490
johnnyliverpool1 is on a distinguished road
Default Re: Any hope for a cure? or maybe even remission?

wow..u sure have had it tough......so young...for what its worth, in your case i would keep seeing your medics..........pls as far as many neuros say, does not exist....certainly they dont have a cause nor cure....no mri can spot it no bloodwork can ..no testing of any kind....just unexplained symptoms like...spasticity, clonus, babinski and hyperrflexia....and they can be caused by other things.....confused...arent we all..........you got a family, your living your life....give it your best sweetheart...johnny
johnnyliverpool1 is offline  
Old 08-22-2012, 07:00 AM #3 (permalink)
New Member
 
Join Date: 2012
City: Philadelphia
State: Pa
Country: US
Diagnosed: 01/2012
Interest: I have been diagnosed with ALS.
Posts: 93
chrisroski is on a distinguished road
chrisroski chrisroski is offline
New Member
Join Date: 2012
City: Philadelphia
State: Pa
Country: US
Diagnosed: 01/2012
Interest: I have been diagnosed with ALS.
Posts: 93
chrisroski is on a distinguished road
Default Re: Any hope for a cure? or maybe even remission?

Sorry to have to welcome you to the forum. I also was diagnosed with PLS in Jsn.2011, it is not fun, you were very young. I to wonder how we out people on the moon, do organ transplants, re-construct faces, separate joined twins, make devices that help people who have lost limbs, buy we can't get a handle on this, it boggles my mind. I think they are just too many patprts to the brain, that they cannot pin it down to one thing, also because every case is different in some way. So in the mean time, do everything you can to enjoy your life, husband and kids. I know it's hard, we all get discouraged and it's hard tom stay positive, but we have no choice. Hopefully they will find a cure or something to put us all in remission at lease. God Bless Us All.
chrisroski is offline  
Old 08-22-2012, 09:55 PM #4 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: Frederick
State: Maryland
Country: US
Diagnosed: 06/1994
Interest: I have been diagnosed with UMND/PLS.
Posts: 2
juvi plser is on a distinguished road
juvi plser juvi plser is offline
New Member (Say Hi)
Join Date: 2012
City: Frederick
State: Maryland
Country: US
Diagnosed: 06/1994
Interest: I have been diagnosed with UMND/PLS.
Posts: 2
juvi plser is on a distinguished road
Default Re: Any hope for a cure? or maybe even remission?

Thank you for your responses. It simply blows my mind that there is no help for us! Yes, stay positive, exercise and stretch daily until you cannot any longer and write everything down so your children will know you. That's what my Neurologist instructed me to do back in 1995. I'm grateful for that. I also pray each night God have mercy on our souls.
juvi plser is offline  
Closed Thread

Tags
als, back, balance, children, cure, death, diagnosis, exercise, go away, helpful, hope, kids, life, pls, research, scared, symptoms


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
ALS remission with glucocorticoids Guille General Discussion About ALS/MND 33 08-18-2014 04:04 PM
Possible cure for ALS nikolab General Discussion About ALS/MND 7 04-08-2012 10:11 PM
Will there be a cure ? ikke General Discussion About ALS/MND 8 10-31-2011 10:00 PM
POA is not the cure-all. What gives? Jason's Dream Current Caregivers (CALS) 8 08-11-2011 08:57 PM
Spontaneous remission Graham T Stories of Hope 32 02-05-2011 01:31 PM
Perhaps a cure steftremblay8283 Stories of Hope 10 03-16-2009 09:57 PM
new hope for als cure zaff4444 General Discussion About ALS/MND 3 08-01-2008 05:26 PM
Remission beckycooper31 People With ALS - "PALS" 9 10-01-2007 02:53 PM


All times are GMT -5. The time now is 10:56 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