UMN Dominate ALS and PLS

[TxRR]

Piperl4 is one of the persons, I was referring to. Here's his post on another thread.


"Well Guys good news, After a 4 year battle with the VA over PLS VS ALS I won. The DAV and PVA would not help saying it could not be done. I did my research on virtually every appeal decision that was made regarding PLS. I took the approach as Johns Hopkins states it is the rarest form of ALS. Then I submitted the 3 best decisions where the Board of Appeals sided with the VET. I received 100% total and perm along with the add on for already having another disability rated at over 60%. They paid me back 4 years and 3309.00 a month. I already got my DOD ID card good for any military installation and it states indef in the expiration. My wife also received that and also champV medical care. It was a long and hard battle with not one person saying it could be done. However if you go to the Appeals website you will see that there are many cases of a veteran with PLS that won their cases. I found one in particular that linked to a case study regarding PLS and ALS. So in the end The VA ruled that I had PLS however PLS is indeed a type of ALS therefore they rated me 100% for ALS. A backwards way of getting there but I got it done. I did not even know I won till my wife called me and said there was one heck of a big deposit in the checking account the decision or rather book came a week later. Now for the bad news two weeks ago I had my routine Neuro check up, with a lot of testing prodding and poking and shocking and another brain MRI plus no less than a dozen or more test I had never had, and he diagnosed me with progressive ALS saying that the PLS progressed into ALS. PLS by no means is a walk in the park but I am finding out already ALS is a whole new challenge. So what was a good thing turned negative in a hurry. Fortunely the ALS foundation now has a clinic just 40 miles away so I do not have to drive almost a hundred miles to Johns Hopkins where I really did not like anyway. So good luck to all of you and I pray you do not have my misfortune. Dave [email protected]
piperl4".

 

[John1]

Mike, in my case I had almost constant fasiculations in beginning. I still have them daily. They are most notable in my calf muscles but I have them all over. I also thought they only occurred in ALS but my neuro seemed unconcerned and reaffirmed the PLS diagnosis. He assured me I would be dead by now if I had ALS.

Bill, I was diagnosed in 2000 and my neurologist feels I have UMN dominant ALS. My EMGs have always been a bit noisy, not clean enough to call it PLS. I am not dead yet near as I can tell. No fasics and some wasting in my hands but not in my legs. Can't walk, breathing is affected and have poor fine motor movement in my hands.