Status
Not open for further replies.

Whitetiger

Active member
Joined
Mar 10, 2011
Messages
38
Reason
DX UMND/PLS
Diagnosis
03/2012
Country
US
State
CO
City
Aurora
Hi Everyone,
A question I have is do PLS symptoms seem to come and go? My legs have remained progressively weaker the last 18 months+, but now weakness in my right arm and hands with muscle spasms in my right shoulder. When I wake up my wife will ask me how I feel and I say better than yesterday for example, then two hours later my muscle spasms begin and my right arm is weaker in addition to my legs. I would love to hear from someone who has experience with PLS to help me understand. Thank you.

I see my neuro again in three weeks, the docs believe it is some form of muscular disease. Going to a neuro-muscular specialist this time. EMG test is only one left to do. All other tests were normal.
 
Hi Whitetiger! Welcome to the group, although sorry your having problems and need to come to here. (hope that makes sense).

I can only speak of my experience, the longer I am up and moving the weaker I seem to get. Although because of the exhausting fatigue of nmd it can be 'percieved' weakness vs actual clinical weakness. However, I have pushed myself and over did the mucles in question on me (specifically my legs and hands) and have become more clinically weaker that does not recouperate itself and then that becomes my new reality.

It is important to pace yourself and reconize your limitations. Hope this helps.
 
Thanks AKmom. I do get weaker also through the day unless I can rest often. I am learning to limit myself, but its very difficult at times. I can't understand why I am unable to do the things I use to. Can you tell me if you get muscle spasms in your body? I am getting a lot of them in my right shoulder. Thank you.
 
speaking again from what I have experienced, I get spastic muscles that will occasionally turn to muscle cramps like a charley horse type cramp. Sometimes I am awaken by an all over 'stretch' type feeling in my body and it will quickly lock into that stretch then will sometimes turn to a complete body cramp that I have to wait out till it releases. Most of my stiffness is in my legs and arms. But I can get the cramps in my feet, hands, back and on a few occasions my abdomin and under my jaw. I have read that spasticity and cramps can be a part of UMN disease.
 
I just looked up what is going on with my shoulder but it doesn't seem to be classified as spasms. It is called Fascuilation. Crazy word! I have them in my right shoulder followed by weakness. I feel sometimes like today is gonna be a better day and there is nothing wrong with me, then something like this happens while I'm driving. Can you please tell if you had any numbness in the beginning of your diagnosis? I have experienced it on my right side. First in leg and foot, then through my hip and right arm/hand. It comes and goes. Again all tests normal. Thank you.
 
The answer is nuanced.

The damage to the upper motor neurons themselves is completely irreversible. If you lose the ability to move a muscle entirely, it is gone for good. So PLS involves a base level of weakness that accrues and never goes backwards. The reason they clinically test strength with just one or two tries is because they are testing for the BEST your can put out. Slowly, that best becomes lower. That's your clinical strength score. For me, that's 0-3 in my legs, 2+ to 5 in my arms, 4 in my tongue/jaw, and a very difficult to evaluate level in my torso and neck.

But that doesn't exactly describe our functional ability. Functional ability is complicated. While for medical measurement clinical strength works great, it does not describe what you can DO very well.

The first complication is spasticity. Spasticity results from "go" signal that should be filtered running into the muscle that needs to relax for a motion to happen. (I read somwhere that 80% of your spine's job is telling your muscles NOT to do stuff... heh!) So even if you can't voluntarily use a muscle more than just a twitch, spasticity may cause it to contract anyway or just be stiff. Spasticity is often made better or worse by postures, and some of us got very, very lucky with how our posture and spasticity work. I learned to floor-to-chair transfer from a quad that could use posture to spaz his ab muscles into a position he could pull his body up. My torso spasticity kicks in most when I twist, so even though I can't sit up on my own traditionally, I can twist, my whole torso will go stiff, and push myself up with my arms almost upright before I sag again. Similarly, even my strength 1 (just twitch, no voluntary movement) mucles spazz my legs straight if I lever my weight over them. So despite having leg strengths that on paper should not allow standing, if I have the right equipment to lever my body up there, I can hold a standing position. What I can't do is voluntarily sit down or relax those muscles... to get down I have to lean back until my posture gets out of the spastic position and then my legs collapse and I fall.

There's also purely mechanical strengths of your bones and ligaments. Quads with totally paralyzed hands but just a little wrist strength can use a grip called tenodesis. You can experiment with this at home by letting your hand hang down relaxed, then pulling your hand up just by the wrist. You'll see your fingers curl. That's not muscle action at all - just mechanical action. C5/c6 quads use it to hold coke cans, pick things up, etc. Hand contracture done in a careful way can actaully make a decently strong tenodesis grip.

Technique is the third variable. Just because you can't do something in the normal fasion, because you lost that strength, doesn't mean you can't learn to use an alternative set of muscles to do it. Disability tends to go like this: "I can't do it at all!" "Oh, that guy can do it, how does he do it?" "Hey, this is easy once you practice, it just looks funny." The peak of functional loss is right after a new impairment, before you learn to get around the problem.

Environment is the fourth complication. There are many things you can functionally do at home, but only because you set your home up to maximize your abilities. You can be very competent at using the bathroom at home, but unable to do the more difficult transfer to a public bathroom's toilet. Grab bars, meds, everything you use at home is set up for you. Your utensils, food, remotes, everything you buy is based on what you can use. "In the world", it set at best to an arbitrary ADA standard that might do very little to address your needs.

Complications themselves are the fifth complication. I have strength 5 in my biceps, 2+ or 3- in my triceps, and 4- in the muscles right at the top right of my back. That is terrible for my shoulders. Joints expect close to equal strength on each side, and are pulled out of alignment when that isn't true. Arthritis and other damage will occur to joints used with less than full strength. Spasticity makes you that much more likely to pull a tendon or strain something. The pain and debility from those complications will wax and wane with activity and how careful you are.

Fatigue is of course a variable. We fatigue easily, and we demand more out of the muscles we can control than they are necessarily prepared to give. When you do all arm motions with your biceps, they get tired quickly. Neurological fatigue can also be a feature of PLS. My doc gives me provigil for it, which takes off the edge. What is a normal activity for someone else is often overdoing it for us. Like many people with chronic illnesses, we can push through today and wipe out our resources for the near future. A normal day can be like running a marathon.

Especially for those of us with the slow progression of PLS, another problem creeps up: mucles just strong enough to try, but not enough to win. I can only sit up in my chair for two hours or so, then its bed for the rest of the day. Full quads do better than I do! My doctor explained there are over one hundred muscles involved in just sitting, and mine aren't strong enough to do it right, but they won't stop trying. So sitting up fatigues me and puts me in a lot of pain, and will until something closer to paralysis sets in.

When it comes to it, sometimes we just have bad days. Normal, able bodied people do too. Our bad days just cause us to be even weaker, and it's more noticeable. Really, really bad days where your neurology is just wonky are called "exascerbations". PLSers and HSPers aren't supposed to get them, but 30% of us do anyway. Exascerbation symptoms wear off and we go back to our baseline strength. We have good days, where we get the most out of what we have left.

We also can't discount depression. The SPF claims most people with PLS and HSP are on antidepressants. After my diagnosis, it was the first thing my doctor talked to me about. Depression makes it's own physical symptoms. My hubby has major depression, and on his bad days he can't cut a pill without his hands shaking, or vacuum the apartment. His symptoms wax and wane like crazy, and if we end up with episodes of depression, our physicality will too.

But ultimately in PLS, your baseline just gets slowly worse or stays the same. It doesn't get better, it doesn't come and go. We can be so well adjusted that it surprises us... I didn't realize until my eye exam that I couldn't hold my head level enough to see through both holes simo, my head is permanently tilted one way or the other. We can look better or worse than that baseline based on environment, technique, how much energy we have, how enthused we are about our task, etc. So functional ability can change radically, but baseline strength only goes one direction: down.
 
My baseline strength as you call it, has only gone down. Thanks for the reply very thorough. Does anyone have fasciculations with PLS? And do the Fasciculations appear prior to more involved weakness in other muscles?
 
nice write up Beky. You have explained some things I wondered about in my own walk through this. Thanks.

Whitetiger, numbness and tingling is not related to nmd that I know of. I think that is more of a neuropathy, which can fit your descriptions of symtoms also. Twitching usually starts after the weakness, at least that is how it is with me.
 
I have scattered fasciculations, usually just for 2 or 3 minutes, a few times a day. I have one fasciculation in my hand that has been going on day and night for a few months now. It is in the muscle leading to my thumb, and the thumb is still my strongest finger, so they are definetely benign.
 
I get them like that too beky. Oddly enough the first ones were in my feet! Then my legs and slowly they have moved upward into my abdomin, back, shoulders, arms and hands. I even once had it in my tongue, but that was when I was having spasms that would clamp my mouth shut all the sudden. Luckly they haven't returned to that area.
 
hi whitetiger.
i think beky our expert has just about mentioned it all in her post.
if you do want any more info i can pm you some web stuff from google books,which i think is the more reliable info.

pls nearly always starts in the legs with spasticity and stiffness,as it progresses up the corticospinal tract it then effects arms/hand and trunk to finally the brain were it involves the bulbar muscles for talking and eating.
this takes several years from legs to bulbar,the continuing progression is usually over decades but some can become severly disabled quicker.

i am typical pls,started in legs with balance and clumsy issues and after 7yrs started to involve bulbar muscles.
i am at 11yrs now and progression is slow and steady,each year theres some difference to the last. can walk a bit round the home but need assistive devices outside,getting a mobility scooter soon so i can finally get out on my own as i was stuck in doors all last summer.

having said that you can temporarily fluctuate from day to day depending on many factors incuding stress,infections, overworking muscles et.

you have to keep an eye on your general health and not push yourself.
i can potter and rest at regular intervals..........some days more rest than potter lol.
if i do nothing for days i can feel a bit stronger but then its short lived.
like beky i have trunk weakness but not as bad as hers,i can not sit straight up for long as my torso stiffens up with spasms. yes i do get fassiculations,mainly legs/feet but sometimes arms and like beky i have had for over 2yrs a persistant fassic in my left palm with minor atrophy.

intrestingly in my first 2yrs i reported onesided numbness/weakness to my neuro but tests show no sensory signs,i was told it was weakness and not actuall numbness...............it felt numb like deep inside but i could feel it if someone touched me.
 
why am i being approved when i have no link?
took me forever to write that,not happy

i mentioned g books.
 
Does anyone get Fasciculations after walking in there legs/butt? I use to have them just sitting/laying down while relaxed but now get them if I'm driving my car/walking my dogs.
 
I get them pretty much all the time. Worse after stretching my muscles or walking. They are benign as my emg shows no denervation only reinervation. I sometimes get them in my butt! My weakest muscles are my hips and butt, which have now started to atrophy! :(
 
I never thought about it till Beky and Caroline mentioned it, but I have been getting cramps in my back and sides when I sit too long. I also start to slouch really bad and I lean on the armrest of my computer chair. Now I know why...funny how I seem to not put these things as desease process. I notice them happening but do not think about why they are happening until someone here describes them as a symptom of theirs, then its like..oh yeah I can relate!

As for twiching glutus maximus when sitting...yes I get that on occasions. If I have been up for a while I get them there and behind my left knee alot.
 
Status
Not open for further replies.
Back
Top