Val, You need to know that you are welcome here on the ALS sight anytime. We are here for you. You seem to be having so many of the same problems. We will all try and answer any questions you have. We are not Drs but we do have lots of experience on this forum. just join in and ask away.. I 'm sure someone will have ideas to help you>> You are not alone.. Hugs, Linda
Yea, like when a symptom comes up that is simular to ALS and you dont know what to do for it, here we are with the advice hun! I know you want more info on PLS. I confess I dont know all about it either. What is it? All I know is that it has a lot of the same symptoms as ALS but it's just not fatal? Sorry, but you are part of the club here. Everyone here posting is alive and living with MND.... Do you know what you can expect later on down the road with PLS?
No I don't know for sure what to expect. All I can find out from the websites are that this is a progressive degeneration of the upper motor neurons only; whereas ALS is the progressive degeneration of both upper and lower motor neurons. The website says that I may need to use an assistive walking device in the future (although, I haven't "talked" to anyone yet who hasn't) and that it can be expected that it usually starts at the legs (which mine did) and works its way up the body (which mine hasn't yet) and that it usually starts in the fiftieth decade (although I started noticing something wasn't right when I was 30). Yeah, it does sound alot like ALS except for the fatality. I'm soooo confused!
You've probably seen the blurbs regarding the potential for a diagnosed of PLS to change within 3-5 years if lower motor neurons start to kick the bucket. Once you make it past 5 years with upper motor neurons involvement only, you're pretty much cleared of the threat of developing ALS.
The course of PLS can take 10-20 years. Some are fortunate enough to only require the use of a cane while others suffer the fate of a power chair. I've spoken with people that have lost balance altogether and do what they call, wall-walking.
Others with PLS develop psuedo-bulbar palsy and lose the abilitly to speak. It sucks.
You've probably also read that PLS is somewhere between a 1 in a million to 1 in a 10 million diagnosis. Makes it very rare, much more so than ALS. So, you can feel real special!
I think the baclofen may be helping but I'm not certain.
Zaphoon, "special" they can have. This really sucks! What's even harder is trying to find the personal information. Oh, I can find lots of info. on the FACTS but what about how it affects you on a personal level?! I think I've cleared the ALS hurdle since I've had this problem since 1999/2000 and had a diagnosis of Limb-Girdle Muscular Dystrophy since 1/2005 by another neurologist. This diagnosed was just by chance.
My new neuro gave me a prescription for the baclofen and told me it was a muscle relaxer that should help with my stiffness and cramping. Tomorrow is the first day I get to take 10mg doses vs 5mg. I'm hoping I'll notice a difference.
As far as how this effects people personally, for me, I find it hard to believe the diagnosed is correct due to the very rare nature of the disease. Couple that with a Babinski that is half-baked.
2 years ago, I had a lot more trouble with stiffness than I'm having now. It was very difficult to raise my legs out of bed, kneel and get in and out of a car. That bad spell lasted for several weeks. Now it's just continual cramps, fascics , stiffness and very hyper reflexes.
I was started on 10mg. and told to slowly increase it until I couldn't tolerate anymore. My previous neurologist started me with 10mg per the other neurologist's orders--she then increased it to 20, then 30, then 60, then stopped it all together stating that she didn't see any change whatsoever. I then went back to the other neurologist, who put back on it and told me slowly increase it myself: 10 for first week, then 20, then 30, etc. I now take 60. My belief is this: I could continue increasing it slowly and my body would continue adjusting. :?
Sounds like the downward spiral you have with chronic pain and narcotics. You start small, then need more and more because it stops working. Can you ever overdose on baclofen? I would think there is a max. amount you can take. Then what do you do?