New to PLS Forum - Mom has PLS

[Al]

Hi Jon. Yes I am still here. More progression but still functioning more or less. Have you ever tried Quinine 300mg for spasms. It's not availlable in some states but worked for me for bad cramping. Glad you're still around.

AL.

 

[halfin]

Jon J, reading this old thread it sounds like you were thinking of ending it back almost 2 years ago and still are today. I've got to say that you must be pretty tough to have stuck it out this long. Even though PLS is supposedly less fatal than ALS, it almost seems worse in some ways because of the terrible cramps people get. At least with ALS the muscles eventually become too weak to cramp, bit of a silver lining.

I hope you can get some relief from your pain and that you are able to find a way forward.

 

[Zaphoon]

JonJ,

Good to hear from you! This stuff sucks, for sure! I find a glass (or 2...) of wine takes the edge off of my cramps. Well, okay, it dulls my senses enough making them tolerable. Prior to this, it has been years since I've had any alchohol (heavily involved in church work).

I'm one of the, "Let's tough this stuff out!" crowd mainly because, despite the misery of it all, I don't like the alternative (and I have a 9 month old grandson!).

Cheers!

Kim

 

[piperl4]

I keep wondering why all the Doctors even over at Johns Hopkins says PLS is so very rare or as they put it the rarest form of ALS. I started out with a diagnoses of PLS then 2 months later BAM I got hit with a majore change and they said they were wrong and it was ALS. So I wonder how can it be so rare when so many people have it. I read through most of the ALS/PLS forums and it sure seems like there are a lot of people that have PLS to me. Far more than the one in ten million or something like that. Then the VA basicly says it dosen't exist and is not included in their presumtive law. I totally disagree with their way of thinking about that, as you are only one neuron away from full ALS when you have PLS and as its been explained to me PLS can change at any time to ALS, and only after you have about 5 years of PLS with no lower neuron involvement can you feel safe. Anyway either one is a life changine illness. I am one of the lucky ones that has a wonderful wife that helps me deal with it best she can and I feel so gulity for putting her through this. It is hard enough to deal with having ALS but to watch your partner in life suffer with you is just so hard. I do not think there are many people who have not thought about taking the easy way out but we all know that would just hurt the ones that love us more so we are stuck. We want to go to counceling but so far it just has not worked out to get there. If anyone knows a better way to cope I am sure willing to listen. I have spent a lot of time writing the VA, Congressmen and such trying to get the presumtive ruling to cover PLS also and that is just for my own personal therapy not that they will ever listen. But it keeps my mind off things for a few minutes while I am writing as I am so mad at them I forget about myself.
God Bless
Dave

 

[Zaphoon]

Dave,

As a veteran diagnosed with PLS, I want to thank you for your letter writing efforts to get PLS included with the ALS presumption.

I, too, doubt the rarity of the disease myself after seeing so many with the diagnosis online. But, as you pointed out and as you, yourself, have experienced, the diagnosis of PLS has a tendency to change to ALS. This is what makes the disease a little more rare. Not all who start out with the PLS tag keep it.

I still doubt as to if whether or not I even have a motor neuron disease at all. I'd like to think what I really have is Cramp Fasciculation Syndrome. I've offered that suggestion to each of the 3 neuros that have examined me but they seem to just want to pooh-pooh the idea. Time will tell...

Anyway, thanks again for your efforts. I'm holding off with submitting any kind of claim to the VA for now.

Kim