The Ongoing Pain Question?

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sral

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Kevin,

Your symptoms seem very typical of PLS and not ALS. You are very fortunate! Although time will only tell, you seem classic PLS.

I'm not too familiar with clonus. Does clonus happen on it's own or only when you flex the foot or leg or hand in a certain way? When my mom was first diagnosed she showed clonus on her right foot but it was apparent only when the doctor flexed her foot. She has not seen anything happen on it's own so far.

As for babinski sign, what happens to the limb with this? What would it look like? I don't think my mom has this.
 

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Capt Al...my legs seem on the same path yours were. The last time I was at the clinic they gave something for my left foot. It is not one of the full plastic braces, it's just a velco band that goes around ankle. Then two laces that tie in the front holes of my shoes (towards my toes). Then I cross them over and pull the foot up and wrap the two velco straps about the ankle band. Seems like something so simple and it helps a lot, when I'm walking and my left foot is coming forward it doesn't let the front of my foot drop too soon.

sral....I would have to say the clonus only happens when my foot/ankle is flexed (I think)? Yea, the more I think about it, it is always when there is pressure on the foot and 99% of the time the ankle is (or just was) in some form of movement (if that makes sense).
 

olly

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hello all

kevinw
you sound just like me with the left foot slapping. your descriptions of symptoms are very good but like your wife for someone else its hard to understand what mnd symptoms are like.even neuro's dont fully understand lol,but we can try in vain to explain.
sral
i have had pls for 9yrs now. i do have hypotonicity/flaccidity=loss of muscle tone/contraction. this is lmn and i have it in my left lower leg.you can not see this loss of muscle tone as it is a neurological manifestation and not the same as someone not having toned muscles but is loss of a muscles natural ability to contract so it does'nt reach its full potential.
some small lmn involvement is common in pls. however they do say in pure pls there should be none and if there is small amount it is umn dominant als. but on autopsy there is lmn involvement evident in pls.
i have clonus. if my arms or legs are in a certain position they have like a uncontrolable tremor.i have focal reflex clonus in my right leg were my leg can suddenly shoot up in the air( if this happens when your standing it's a bummer). also my arms or right side of my body can twitch. abnormal movements are common in mnd.
god bless you both.
caroline:-D
 

sral

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Caroline/OLLY,

God Bless You ... 9 years and counting!

How did your first leg symptoms start? Was there any weakness in the beginning when your legs stopped moving like they use to?

My mom is walking much slower, has difficulty with the stairs and seems to have abit of a waddling gait (wide stance and seems to move slightly side to side).

By the way, thanks for describing what loss of muscle tone means. I had never heard it explained as an inability to flex (makes sense)
 

olly

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sral

i began with painfull muscle spasms and stiffness in the legs for this first 4mths, then weakness in the left lower leg/foot,dragging it along.then fasicc's and abnormal movements/clonus. i have developed progressive limb girdle muscle weakness,hip/shoulder girdle weak over the years. the pls has slowly worked up my body to my bulbar muscles now so i have problems chewing/swallowing/slurred speach when tired and spasms/clonus in my right side of face.
other than all this and my body falling apart i am doing well lol:)
like your mum i tend to have a waddling gait due to the hip girdle weakness but if the spasms /stiffness in my legs is bad it can go spastic. apparently this alternation from stiff/spastic to flaccid/weakness is normal.
god bless you and your mum.
caroline:-D
 

sral

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Caroline,

Your nine years into it and you can still walk, eat, talk even if not as good as before ... so this is GREAT.

My mom's first signs were bulbar. Her speech was very slow. About 9 months later her knees started to bother her and the stairs was painful. About 9 months after that her legs started getting pain and were stiff. Now about 2.5 years later, she can still walk without a cane (slow and not very steady), she can still talk (very slow and slurred at times), she can still swallow and eat.

Basically she can't go far distances walking and she can't eat really fast. She does not have much stiffness anymore. She does not have clonus happening on it's own or babinski. Her calves look much smaller than before. And one of the biggest issues is fatigue and pain. Her pain moves and isn't in the same spot all the time. It is typically in joints and limbs.

I really don't know what to think anymore. Sometimes I question whether her diagnosis is correct.

I'm starting to doubt that it is PLS because she does not look stiff anymore.
I'm not sure if it is ALS because she has alot of pain and her symptoms are on both sides at once (with ALS it is typically first on one side then on the other).
Also, with ALS pain is not usually the first symptom when affecting a limb.
I don't think a waddling gait is an ALS sign either.

Who knows anymore!
 

olly

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sral

no pls or als patient are the same as the next. some progress slower or quicker in either one. i know some pls'ers who have had it over 20yrs and are no longer as stiff as they first were but i think that is years of meds.
if you are worried or have doubts as to your mums diagnosed get another opinion. if shes under 5yrs of symptoms and there are getting worse get a emg done.
i do hope her symptoms settle down/plateau that will be a good sign, mine did this after over 2yrs, slow for 5 then slowly sped up again past 2yrs but i'm hoping things will calm down again.
god bless
caroline:)
 

sral

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Thanks Caroline.

My mom's symptoms really have not sped up much in the past 6 months. However, the only real change is the size of her calves. The pain has been there since the beginning. As each day passes, the stairs become more difficult. Some days she can hang on and walk up slowly and other days she literally needs the strenght of her arms to pull her up each step. That's the interesting part of it. She actually has good and bad days. Her good days are never as she once was though. There are times when she pronounces every syllable and moments when it's more slurred. Days when she can barely move her legs (from pain) and days when she moves freely although slower.

Do you experience good and bad days or is each day worse? Can yo still do stairs? When did they become difficult for you?

Thanks for all your support by sharing.
 

kevinw

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sral....If I can hop in here, I can say that I have some better days than others (might have to do with work load or weather). As far as stairs for me, I can still step up them pretty good, although slower than I used to be able to. My main problem with stairs is my balance coming down them, it feels like I can't trust my feet, ankles, and legs (every step feels like it could be an "off balance" fall forward.
 

sral

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Thanks Kevin.

I've watched my mom going up and down the stairs and up seems harder than down. I think this is because her calves are getting weak. Unfortunately, I don't think it's a co-ordination problem causing stairs to be difficult. I think it's weakness and this is not a PLS symptom
 

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Kevin You and I Buddy i do up alot better than down . Ramps going up, dont like down .Undulating Surfaces bad too Like a Brick sidewalk thats not done level or a wood deck thats not level .Cant step over a hose laying in front of me without using my cane . These all go back to Balance and Coordination . To find out about weakness grab the Kitchen Counter by the sink, now kneel down on the left knee ,holding the counter and come back up ,now try the right knee . see which is harder to come back up ? Geo
 

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sral....
Quite a few posts have come on since you asked me how long, etc.
I actually started having symptoms long before I would let myself believe there was something wrong. I started with the stiff hips in 2003. The tripping, foot dragging and balance problems started in 2004. They became significantly worse throughout 2005 and 2006. I started seeing a neurologist in 2006. He never gave me a diagnosis. Tried to convince me I had restless leg syndrome. I switched neuros.

I didn't get a diagnosis until 2007. At this point, I cannot walk without the walker. Not a single step. Have extreme difficulty turning over in bed. That's the girdle muscles, Caroline (Olly) mentioned. I've lost quite a bit of dexterity in my left hand and the right has started showing signs of loss too.

I don't believe I have lost any muscle tone.

Like Kevin, down is much more difficult for me than up. It's the balance thing.

I do not experience good days and bad days. After several weeks I'll just notice that something is a bit more difficult to do than it was a few weeks before. In other words, just slowly degenerating.
 

sral

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Whitsend,

Thanks for your response. You're fortunate that after all this time your still functioning.

Why would you say you cannot walk without a walker, is it because you can't get your leg to move?

You mentioned that you've lost no muscle tone, but have you noticed that your limbs are smaller just from lack of use?
 

olly

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sral

i do have good and bad days, what i do one day if too much can leave me bedridden for days at a time. this happened last week trying to do a little gardening i was so stiff and in pain i was in bed for two days and could not move.
i have two hand rails on my stairs to help pull me up due to weakness like your mum, i may be moving home soon to a ground floor home as i have been accessed as needing one. going down or up is a problem with balance,i have fallen many times.
i think you may have a missconception about pls progression
firstly it is over the course of the desease slow progressing, life expectancy can be upto 25yrs.pls is progressive muscle weakness from muscle spasms, the spasms slowly spread to different areas over years till involving the whole body in some cases, and making the muscles weaker, it is not what some people think that the spasms make the muscles stiffer and stiffer till they are like a board.between the spasms/stiffness you can have times of floppy/weak muscles this continues to alternate causing muscle damage.
take care
caroline:)
 

sral

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Caroline,

Can you recall how you were two years into your symptoms? My mom is just 2.5 years in and she walks really slow and seems to have weakness. I think the stairs are due to bad knees as well. Two years ago they saw early signs of arthritis in her knees.

She told me this morning that her bad leg goes totally stiff in bad weather. She really is not feeling well though. It's not just the stiffness that bothers her. She also has pain.

Geo, did the best thing by moving to the warmth. Unfortunately, there really is no all year round warm place in Canada. :cry:
 
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