Doc mentioned PLS

[Waddles]

I'll try to be brief. Onset in Oct 2007 with "weird" right foot things. Progressed to stiffness in that leg and also now in left leg. Hyperreflexic at knees, not at ankles. Hoffmans, +rombergs, downgoing plantar reflex on left, no response on right foot. Weakness in knee flexors, and weak in left arm. Leg EMGs clean--hips muscles "sharp" but not out of norm. Right arm have positive sharp waves and half-magnitude CMAPs compared to left. Atrophied thenar muscles, more right than left. No carpal tunnel. "Waddling" gait. Stairs are tough either way, but going down is harder. Fatigue with exercise--walk like Lurch or something after a bit. Feet are often ice cold, even in socks and slippers.

Complicated initially by two t-spine herniations discovered on MRI, along with arachnoid cyst. Apparently not significant enough to explain everything.

Developed Lhermitte's last summer (08). Have had paresthesias in leg/feet--buzzes/zaps. Have big problems with both hands, mostly at night--numbness, primarily. They cramp VERY easily when I'm working (typing) or using them. Can't open jars or chip bags or anything any more.

I thought this was MS (with the Lhermittes and all). Doc thinks PLS and is sending me to top neuro at Methodist in Houston.

My question after all of that: Does anyone have paresthesias with PLS? It's my understanding that it's pretty much strictly a motor disorder.

Thanks for any insights you might have.

Waddles

 

[Waddles]

Crickets******

 

[Zaphoon]

Waddles,

Parathesia can be caused by a number of things, like: thyroid disorders, vitamin deficiency, diabetes, atherosclerosis, etc.

Chronic parathesia indicates a problem with neurons. Since PLS is a motor neuron disease, I guess something like this can be expected.

 

[olly]

hi waddles

hi and welcome to the forum.

i toatally understand what you are going through.
i was repeatedly tested for ms several years before it was ruled out.
some with ms have normal mri's for some years before damage shows up.
my neuro was certain it was not ms as my optic nerves were always ok.
before my last mri he said he felt it was something more specific than ms.

in the first few years i had what i thought felt like loss of sensation down one side of my body,like i had a stroke.
i could still feel to touch but the effected side would feel different and was weaker.
these episodes would last for 1-2wks then slowly get better.
this convinced me it was ms.
but researching after diagnosed of mnd i found out it was probably weakness from acute umn lesion that causes this.

when i went to mnd clinic the neuro said i had more waddling gait than spastic.
(this neuro did not have a clue about pls )
in spastic paralysis after a spastic episode the muscles go in to a weakend flaccid state,then back to spastic and so on.
when my muscles are in a weakened state after severe spasms my gait is more of a waddle,also after 9yrs of all this my hip/thigh girdle area is very weak so this causes more of a waddle.
i asked my pt about this and what the mnd neuro said,she said i was correct and it is stated on the spf site and other places.

no one understands this desease better than us,some pls'ers educate and teach neuro's about pls:!:.

 

[Waddles]

Many thanks for the replies. I've had all the rule-outs done. I don't have a thyroid and am on replacement meds. I *was* hyperthyroid until a couple of weeks ago and had my replacement medication lowered, but apparently, that wouldn't explain these things anyway, according to my neuro.

One thing I have that I wonder about is that my thumb will often start moving by itself. I guess it's "twitching." But it will just move up and down on its own. EMG a year ago on that arm was normal. Having a new EMG next week, actually, on upper extremities, so we'll see if anything new.

Is the thumb thing a "fascic"? I also have a calf muscle that contracts pretty powerfully after I walk, but I've read that calves often do this kind of thing and it can be completely benign. It does it for an hour or two and then quits.

Thanks!
Waddles

 

[Waddles]

I know I'm practically talking to myself, but I just realized that the calf thing isn't a fasciculation, it's a spasm. It's a large movement of a big muscle just under the inside knee. You can put your hand on it and feel it. It's kind of like a baby rolling around in utero in the third trimester--for those of you who've ever experienced that. ;-)

Are big spasms like that common in PLS?

Sorry to keep asking, but I'm a biologist and gathering data to weigh possible outcomes is what I do. So...I'm doing it to myself.

Waddles

 

[Al]

I'm listening waddles. I don't have PLS so can't offer first hand knowledge but wanted you to know someone was paying attention.

AL.

 

[olly]

hi waddes.
i am here and listening.......................
i dont have much in the way of symptoms in my hands,but have heard others mention about there thumb twitching. i once or twice had my big toe twitch in my left foot that has alot of problems.
you can have a spasm in a large muscle,though i personally can't say this has happened to me. i have had cramp in my calf muscle.

 

[sral]

Wow Caroline, after 9 years your hands are still okay!

That's fantastic - wishing this continues forever!

 

[olly]

lol sral.
no my hands are not ok per say.
untill recently the only stiffnes/spasms i had was in my right hand,few weeks back i started with cramp in my left hand in the centre of the palm and around the base of the thumb.
my eye to hand co ordination is bad,i failed all the ataxia tests early on in my illness.
i type with just the one same finger,my son laughs at this but its easier for me.
i suppose i should have said i dont have too many problems as in atrophy or really bad weakness compared to everywhere else.

 

[sral]

Olly,

I'm sorry to hear that your hands started having pain. I'm glad however that when you think of your hands you feel they are relatively okay. I truly admire your positive attitude.

You're great!

 

[etchick]

Hands

My penmanship looks awful. I'm taking classes at a community college (most classes are on-line but "speech class" is live) and I am forced to write brief sentences and I'm doing o.k. I'm in a class with people who are about 20 years younger than me and they can write and walk beautifully. Most of the time I write notes on the computer.:|

 

[olly]

etchick,i am sure you are doing great and you are a great inspiration to everyone in class.
what ever you can do no matter how little its a credit to you just remember that:-D

 

[etchick]

Thank you, Caroline.

Dawn

 

[john richardson]

:razz:

I know I'm practically talking to myself, but I just realized that the calf thing isn't a fasciculation, it's a spasm. It's a large movement of a big muscle just under the inside knee. You can put your hand on it and feel it. It's kind of like a baby rolling around in utero in the third trimester--for those of you who've ever experienced that. ;-)

Are big spasms like that common in PLS?

Sorry to keep asking, but I'm a biologist and gathering data to weigh possible outcomes is what I do. So...I'm doing it to myself.

Waddles

you are not talking to your self!
you have all the usual simptoms
how is your speech
i try to breath slowly