Strength, Spacicity...Progression

I just recently went to my appointment at the Emory ALS Clinic and it went pretty well in terms of the baseline items that they monitor. I was told that I still fit the upper motor neuron PLS profile. However; I was told that things will, of course, continue to progress. Strength and Oxygen levels are still at excellent levels.

I do feel this disease creeping into new parts of my body...from my legs to my arms. My question is: does it make sense that while my strength is still 5/5 that my balance and ability to walk are diminishing? I guess that is why PLS is such a strange disease. I think that in my denial, I want to believe that as long as I am still strong, these recent several days where I feel so wobbly are simply due to lack of sleep and lack of exercise.

Any comments or insight appreciated...

It makes sense to me! I don't know what I have, but other than it being all in my head, PLS is the only thing they ever mention. I still have good strength but cant walk much beyond a step or two now. 'Wobbly' is certainly a problem!

bad balance,i see you were diagnosed in 2010 but not sure how long you had symptoms before that.
simply put..........weakness in pls is caused by years of spasticity taking its toll on the muscles.
unlike in als it is very slow progressing and does not lead to permanant paralysis .

some like myself can have clinical weakness such as a lower leg on there first clinical exam.
why this is i am not sure but i think it could be due to an early acute umn lesion.

in pls the desease process spreads up the cortical spinal tract (leg onset)over several years to the upper body then bulbar.........very rarely from bulbar down.
its so strange how these deseases have some order to them.
the fact you are still strong with increased spasticity is just one of the mysteries of this illness.
lack of sleep or any other health issue can have a negative effect on our symptoms.

after 12yrs with pls i find i have more weakness then spasticity..........it seems that way but i figure the increasing weakness is having a counter effect so the spasticity does not seem as obvious.
my point of onset (legs) obviously is my weakest area and after 5-6yrs of very slow progressing bulbar symptoms that area too is now getting weaker.

having pls we have so much to be thankfull for.........we have time to adjust to each step of the desease and the disabilities it incurrs.

arkallen,you just baffle me.
you post about having weakness in your threads then here you say you dont have any weakness yet you can not walk or talk.
your neuro can not find any clinical weakness ,yet others like myself with weakness can still function far better than you.
dont know what you have either,you dont have the normal progression as seen in pls and doubt it is pls.
i dont mean to have a go at you,i just find so many inconsistances.........no wonder your neuro can not work out whats wrong.

I have my first follow-up appointment next week with my neurologist at the University since being diagnosed this past summer. This weekend I will put my questions together for my appointment. I'm trying very hard to keep a positive attitude and have acceptance to this. There are days when it's so overwhelming and there is not alot of info out there to read about PLS to get answers. However, I am finding this site to be so helpful. When I'm questioning something, I'll just search past posts and see what I can find. Most of my issue is still my left leg and the spasticity, plus foot drop which makes me trip alot. A few new twitches have appeared in my upper left arm, but it comes and goes. Some days my balance is quite off and I find myself feeling like I'm the ball in a pinball machine. My sister says it is a good thing I have a center island in my kitchen so I can at least bounce off of it and into the counter! Every day now someone asks me at work what happened to me. I'm used to it now and it does not bother to me to tell them about PLS. Of course, so many have never heard of it. I find people to be very concerned and interested in hearing about it.

Thanks for your posts and good information. Take good care of yourselves.
LouLou

PLS is a real booger! I use to have it, according to 2 neuros so I can speak with some authority. Well, that is I use to be able to speak with some authority until PLS was taken away from me by the last neuro. So, anything I now say about PLS, you'll have to ignore. You can, however, go back in the archives and find things I've formerly written about PLS and those posts may still be considered valid.

You may now ask me questions (that I can answer with some slight degree of authority) on the subject of inverted psoriasis and/or psoriatic arthritis and I'll be happy to answer.:twisted:

zaph, a gotta laugh,.......av u wondered why pls is so rare.....cos the neoro,s dont av a clue , in fact some dont believe it even exists....mnd is a tragedy made worse by the lack of progress in finding the cause and solution..so my laugh is ironic only.....motor neurons, more like notor meorons........ps..me cars broke down and am avin a bad day........sulks.....johnny

Like Olly, I have weakness in my legs...when UNM was first suspected, I had weakness in the left hip. Now, my legs are noticeably much weaker (I notice, as does my neuro). Fell down the basement steps last Saturday, and did so probably because I didn't lift my foot high enough to take the next step - this happens with weakness...and subconsciously, I think....which makes leg weakness rather dangerous due to higher likelihood of falls.

My tailbone, my upper left arm, and my right upper arm all hurt ***

But the upside is that I didn't knock myself out. :-D

Be well, everyone!

Mike

*** And some other minor parts, too...

Hi Arkallen, do you wear glasses? I believe metal framed glasses is what caused my pls. If I put on metal frames I can imediatly feel strenght leaving my body.

It's your ankles that are weakening. That's what keeps your balance. I just got some AFOs last week and can walk almost normally now. I still use a cane though to make it easier but can walk well without the cane too. With AFOs your feet are flexed and you don't have to work so hard to high step so as not to trip. I'm thrilled at how much easier it is to walk with them! I used to fall regularly and get very worn out without them. Mine are carbon fiber. I highly recommend getting them.

Ms. Pie.....very interesting that the AFO's are working so good for you (I am glad). My PT/OT have been mentioning them for a while and I have been avoiding getting them, having them fitted, then maybe re-adjusted if they are rubbing. I guess I am just overreacting about them, but I bet they would help my balance and falling. I agree it's all in the ankles, when I'm standing still I can feel my feet & ankles constantly flexing and adjusting just to stay standing. My last visit they suggested I at least go to one of those special shoe stores to have them stand on one of those machines that show how the pressure around my feet are always changing with my shoes on, then to see if they suggest a more flat footed shoe. This was after they noticed my tipping backwards with my shoes on and having to step back to catch myself from falling.

Thank you for your post.....I am going to have to reconsider going through the process of getting AFO's fitted if it helps save energy also.

I have to add a question....How does it feel going down steps with AFO's? It is hard enough without them trying to balance, does it give you too much of a "flat footed" feel, like you cannot reach with the front of your foot towards the next step?

Kevin, I got my AFOs fitted and adjusted in 1/2 hr and they make a world of difference. No work to stay balanced. No more falling!

I went through my PT as the clinic works closely with the guy that fitted them.

Ms. Pie said:

I went through my PT as the clinic works closely with the guy that fitted them.

Click to expand...

Yea, I would also go through the PT at the ALS Clinic...she has a place that she works with for them.

You will be amazed at how much energy you will have! I can stand up straight and can reach my full 4'11"! LOL! It really does feel good, all kidding aside.