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juvi plser

New member
Joined
Aug 21, 2012
Messages
2
Reason
DX UMND/PLS
Diagnosis
06/1994
Country
US
State
Maryland
City
Frederick
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!
 

johnnyliverpool1

Distinguished member
Joined
Jul 5, 2011
Messages
473
Country
uk
State
moved back to blighty
City
britain
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
 

chrisroski

Active member
Joined
Apr 12, 2012
Messages
93
Reason
PALS
Diagnosis
01/2012
Country
US
State
Pa
City
Philadelphia
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.
 

juvi plser

New member
Joined
Aug 21, 2012
Messages
2
Reason
DX UMND/PLS
Diagnosis
06/1994
Country
US
State
Maryland
City
Frederick
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.
 
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