Pls

bpayton · 02-22-2009, 12:00 PM

I went to my first ALS Clinic at Emory in Atl. yesterday. Iwas diagnosed at Emory with PLS in 2006 by Dr. Hopkins. I was walking with out assistance then. I went to using a cane,rolling walker and now am in a wheelchair. Dr. Glass said it was very unusual for legs to be at this severity without symptoms in arms or bulbar. Dr. Bragg,the other neuro said he thought my reflexes in upper body were hyper but Dr. Glass said they were brisk. He did say that we are dealing with a rare disease and you never know. Do any of you have sever problems with your legs and not in other regions? Thanks Billy

olly · 02-22-2009, 12:30 PM

firstly everyone is a bit different,you can not base your progress on someone elses.
are you in a chair all or most of the time?
could you walk at all now,even a little bit?
mine is typical umn progression,started in the legs and slowly worked its way up to bulbar.
i would say my lower half of the body from waist down into legs is my weakest area.
so yes,it spreads in a uniformed manner but the origional areas of onset will always be that one step further in progression/as in weaker.
i can walk round my home ok using aids or the walls ect,outside not very far with walker.

neuro's can interpret signs differently,were one would think positive another would think negative.
i too have had different opinions on reflexes.
dont let this worry you,its just neuro's being there usual smart arse know it all selves.

TxRR · 02-22-2009, 12:51 PM

I was diagnosed with PLS in 2007 and it has mostly affected my legs. I do not use any type of assistive devices to walk although some days it would probably be safer. My upper body seems to be unaffected. This is a very strange disease that seems to affect everyone differently. Once, they find the cause and the cure it will probably answer alot of these questions. I hoping thats going to be very soon.

bpayton · 02-22-2009, 01:54 PM

Olly, I can walk a little but have to hold on to things.It is mostly just from my chair into bathroom or from my carrier to the door of my van. I can also tell that my arms are weaker because i can' lift things like i used to do. Thanks for the reply. Billy

bpayton · 02-22-2009, 02:04 PM

TxRR don't wait to long I had a couple of falls and tat isn't much fun. Also in my reply to olly I forgot the t in can't. I can't lift things like I did before. Did you hear from VA? They denied my claim but I am going to appeal. I am getting medical treatment because I am already service connected for other things. Good Luck Billy

Zaphoon · 02-22-2009, 02:14 PM

I've been told I have PLS and it has effected my arms, legs and voice. I still walk (with a kind of funk to it) but lifting things has become problematic. I have trouble raising grand piano lids, lifting cardboard boxes (that don't weigh much) and carrying books, groceries, etc...

I'm also a Navy vet but don't expect to get much for having PLS (but I'm sure going to try).

sral · 02-22-2009, 05:59 PM

bpayton,

You said you were diagnosed in '07, how long had you had symptoms before then? Was the progression leading up to diagnosis in '07 slow and then moved more rapidly or had you just started having symptoms when you were diagnosed?

bpayton · 02-23-2009, 06:31 AM

sral
I was diagnosed in April 2006 and had symptoms for at least a year maybe longer. I am a diabetic and thought it was circulation problems or other complications from the diabetes.
I was checked for these and other problems by local Drs. and neurologist before being refered to Emory. I have been seeing local neuro every 4 mos. since. I get my diabetes and other medical problems taken care of by VA,so I asked for a referal to VA neuro. Emory neuros. do the VA work and he is the one who sent me to Emory ALS Clinic.
Take care,
Billy

sral · 02-23-2009, 12:59 PM

It seems like your progression was slower. Hopefully it'll plateau or slow down again.

TxRR · 02-24-2009, 04:28 PM

I fall quite often. My last fall was this past Sunday. The good thing is that I'm getting good at it. When I feel that i'm going to fall I just bend my knees and go down gently. My wife says it looks like i'm falling in slow motion. If they ever find a cure I can certainly become a stunt man.

Last I heard, the VA was waiting on my medical records. I'm sure they're going to deny me so i'm in no hurry.

etchick · 03-05-2009, 11:29 AM

This is the same story that I have. I've been going to PT in Knoxville but they don't know what to do for me other than excercise. My physical therapist keeps making me mad by continually telling me that I have weak muscle. Dah. I know. Have you had any experience with PT?

sral · 03-05-2009, 03:01 PM

I think many physiotherapist don't understand the underlying neurological conditions causing the symptoms. For my mom, I'm telling the therapist what I believe she needs and then she tells her what exercise to do. My mom thinks she's lazy because she does not spend much time with her. Some stretches would be great to have the PT do, but she doesn't.

Good Luck!