2 questions for you PLS folks

First one: How long did it take until diagnosis? Either from symptom onset or from when you finally decided to go to the Dr about it. Just wondering how long it's going to be until they decide it isn't anything else.

Second one: Do you have shaking in your weakened muscles? I have some areas (hip area, thighs, arms, one hand) that shake when I tighten the muscle in a certain way. Like, when the neuro has me try to tighten my thighs against his resistance. Or when I squeeze my hip/glutes a certain way. Hand shakes when I make a loose fist, etc. My mom (nurse) says it is due to weakness. Neuro says it's weakness in thighs and "hmmm, show me again when I see you next" in arms. It feels a lot like the ankle clonus I have.

17 years and yes.

For me it was 7yrs......busy ruling out ms and other stuff,just watching and waiting.
My arms/hands shake sometimes when using them,old pt said it was due to weak core muscles but not sure.
If I hold my legs out straight when sat down they shake like mad but that could also be due to clonus.

nobody knows what causes pls and there aint no cure......that is if pls exists at all...which has its neuro doubters........so a diagnosed depends on the length of a piece of string........as far as looking at your own symptom, or what you percieve are pls symptom, you will only drive yourself daft cos upper mptor symptoms could fit many causes and seeing as pls is rare as rare your gonna be wrong....almost certainly...so why am i here you mightsay...........well, cos i fit the unknown jigsaw and i like popping in, and you never know when the smoking gun fire a broadside.......the sun shines brightly today........johnny

Johnny is right on, as usual.

I was diagnosed quickly in comparision to others on this site--about two years. I had what may have been symptoms for an extended period of time. I thought my problems were caused by a bad back and old age. After a severe bout of flu, the symptoms became disabling and progressed quite rapidly. In two years I lost my voice and my ability to walk, except very slowly with a rollator-type walker. Now I have been fairly stable for about two years. Everyone is different.

old dog, what a very apt name for a pls..er. just how you feel, an old dog......still with a shiny..ish coat and a wet nose.......not to be put down just yet, ....johnny

Johnny - That's exactly how I feel. I still have all my teeth and can snap at the docs once in a while.

I remember a line from a Woody Allen movie about locking someone in a basement with an insurance salesman...lol.
Well, one has returned and there is a close second on the horizon.

Other than getting occasionally grouchy, I like it here.

It took about 2 years from first onset. My first sold symptom was a funny feeling in my cheek that caused problems enunciating certain words like strategically. I was convinced it was a tooth infection. After seeing numerous dentists/doctors I was finally referred to the MDA/ALS clinic and they took less than a year to say it was PLS. Bulbar ALS progresses rapidly so they said I would be near death if I had Bulbar ALS.

I don't have the shaking you are referring to. I do have clonus in my legs.

Thanks for the input. At this point we just know I have some type of UMN disease. We've ruled out a million things and not sure what else it could be at this point. I have a neuro appointment on Tuesday so will talk to him about my progression and if he has anything else to rule out, or is ready to call it PLS. Not sure what exactly he is thinking at this point. So far I've had at least 2 years of symptoms, and a year of going to neurologist with steady progression.

Hi Wendy,

I cannot say for certain how long I have had symptoms. Much like old dog, my symptoms were likely masked by severe and chronic low back and bilateral leg pain. I finally had a fusion (L3-S1) in 2008. When I was a year out post-surgery, my neurosurgeon wanted me to see a neurologist because he recognized that my symptoms of leg weakness and pain were neuromuscular - and not neurosurgical.

And there you have it...after what seems to have been every kind of testing imaginable, I'm diagnosed with PLS -- initially in 2010, and confirmed by a neuromuscular specialist just a little over a month ago. I would bet that I've had sx. for well over 10 years, however -- just made all the more complicated -- and left undiagnosed -- by the bad back stuff.

I also have shaking in weakened muscles - mainly legs, and I have very weak hip flexors, knees flexors, and tibialis anterior (all of these noted in my most recent workup). Also have knee and ankle clonus, and weakness in my left finger extensors.

Mike