The Ongoing Pain Question?

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Thanks Kevin.

Did you experience any stiffness?
 
sral...

Yes.....I have had extreme stiffness in my legs since the last few months of last year. Sometimes it feels like walking with casts on both legs. They still get stiff at different times during the day, but the warm weather seems to help more.
 
thanks Kevin.

You did not mention stiffness as a symptom. Did you only get cramps and spasms or stiffness too?

Initially for my mom, I first noticed the stiffness in moments of panic. I remember when my daughter was about to fall off her bike and my mom was in a panic to run to her rescue she completely locked up and although the movement at that time was still swift she looked stiff as a board. As time progressed, stiffness was more apparent in her movements
 
sral....
No pain. However, I did have a stiffness in my hips. Really 'groaned' when I went to get out of a chair. Then the tripping/dragging of my left foot began.
 
Kevin,

Sorry for the second message on stiffness. I thought the first one never got posted.
By the way, did you get a diagnosis yet? Since my mom's symptoms only began just over 2 years ago, the diagnosis is upper motor neuron disease. At the 3 year point, the neuro said that if the EMG is still negative, then a PLS diagnosis would be made. We're praying!

Whitsend,
Thanks for your reply. Stiffness is apparently a common symptom of PLS. My mom said the stiffness isn't as bad anymore. I hope that this doesn't mean anything bad.
 
sral...
Just saw your last reply. I am now stiff everywhere from the waist down. I look like the tin man trying to walk, turn or bend over. And yes, I had those moments of panic when everything locked up. If I couldn't catch myself, I just tipped over. I remember one time in particular. I had just parked my car in the parking garage at work. There was an especially bad thunderstorm going on. I had just got out of my car when a horrendous clap of thunder sounded and scared the *ell out of me. My knees went to rubber and the rest of my body just locked up. Sounds like what your mom is going through.
 
Ahhhh....the hard part....explaining the symptoms (this is what makes my wife mad at me when I try to explain her how I feel). But to answer your question, I would say up to 3 months ago it was only stiffness in my legs. Now it's stiffness, aching/cramping pain when resting, and minor/mild spasms when resting (I don't want to make a big deal over the spasms, they are more annoying than anything else, it just seems like the muscle can't get comfortable and find it's spot, it just rolls around in there).
 
Thanks Whitsend.

When did your first symptom happen? What limb was affected?

It's only been two years for my mom. She started lithium in January and the stiffness seems to be less, although she is more fatigued
 
sral.....my diagnosed is PLS at this point. My local doctor had sent me to my first neuro, who ran all the original bloodwork & other tests. He seemed to an idea that something was going wrong with the nerves and muscles, but never really commited to any MND diagnosis. So he was very confident that he should referred me to an ALS specialist in the Philly area. He never really said it (and he was very nice about it), but he gave the impression that maybe the specialist could better service my needs, they had worked togeather in the past. So I went there, re-did most of the test to confirm they were okay, and she agreed with my original neuro of the PLS symptoms and now it's just a waiting game for what next few years might bring (like Geo would say "limbo land"). :-D
 
Kevin,

Are you like my mom who has not had symptoms for 3 years yet?

By the way, have you lost any muscle tone in your legs?


I thank you all for your kindness in sharing your experiences. It helps!
 
No need to thank me at all....I'm just the same as you searching for information to either make sense of this or put down another road of a diagnosis that maybe got overlooked, but is right in front of me.

Anyway, yes I am just like your Mom, still within that 3 year window. My problems are 95% lower body with just minor problems with my left hand (stiff fingers, no pain, it just seems like they don't wiggle anymore).

I don't think I lost any muscle tone at all. I used to ride bike years ago, but never had really great tone to start with (to quote my wife I have chicken legs anyway). :-D
 
I enjoy reading all your comments. I had foot drop for awhile before the legs began the fasciculations, and the cramps with the pain. After about a year and a half of this I was finally DX with ALS, but by that time I had lost most the use of my legs and was in a wheelchair full time.

I know it is terrible being in the limbo land without a DX. I feel for you all and wish you the best.
 
Captain Al,

I'm sorry to hear of your eventual diagnosis. Did your leg problems start all over in a particular part of your leg, i.e. thigh or calf?

My mom does not always describe the pain as cramping. Sometimes she says it's just pain.
 
They said I had limb onset ALS. It started in my feet. My feet would cramp and I would have to pull my toes back to relieve the cramps. It eventually, slowly moved up the legs, until now I have no use of my legs. Current symptoms are in my torso, arms, and upper body. It has taken about 4 years to move that far with me. At least mine has been slow progression.
 
Capt Al,

My mom says that she needs to curl her toes upwards when lying in bed sometimes because the spasms in her legs are so bad. This in itself was not cause for an ALS diagnosis. A clear EMG made they diagnose her with upper motor neuron disease. They said that up until the 3 year point they could not call it ALS. She has lost some muscle tone on her calves, but I don't know if that is from disuse or disease. She can still walk but it's a waddle type walk. I'm praying that the diagnosis does not change.
 
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