Not sure if I belong here yet

[cemc]

Have been lurking and reading messages for a while and guess its about time I introduced myself properly.
I don't have a diagnosis of PLS - in fact I dont have any sort of neurological diagnosis other then the vague non-committal 'functional neurological problems' one. I do seem to have a lot of things in common with people with PLS though. Neuro exam shows positive babinski, and lots of upper motor neurone signs. I have had progressively worsening muscle spasm, but no real muscle wasting, except perhaps my butt muscles. I now take quite high doses of baclofen regularly to enable myself to walk at all, and have to use crutches. Leg problems have been going on for about four years now. More recently my hands don't coordinate as well as they used to (can't do the finger nose thing, or clap hands regularly, or do alternating hand tests), and I have also noticed my voice is getting much rougher and croakier especially when I am tired. I have now had two MRIs of brain and C-spine both normal, and a normal LP. Muscle testing (EMG?) just showed mild carpal tunnel in one hand. At first I was quite worried about how disabled I was getting, but having got muscle spasms a bit under control it does seem like progression has slowed down a bit.

Anyway, whether or not I have PLS, I have found it useful lurking on this message board as so many of you do seem to share the same problems as me.

 

[joelc]

Welcome to the forum! I hope you can find the support you need here and I also hope you don't have PLS.

 

[olly]

hi cemc, welcome to the forum:-D

it does sound like it could be pls but we can not say for certain.
i have all your symptoms,your not alone.
pls is a clinical diagnosed after everything else has been ruled out through testing.
pls is more widely diagnosed'ed in the usa than in the uk,here it is classed as mnd but most neuro's dont like to give that tag.
the title "pls" is rarely used with it being based on clinical symptoms,some will only diagnosed with mri evidence but that is very very rarely seen.
hsp is more of a common umn desease but mainly effects the legs ,we have a member from newcastle who was diagnosed hsp but recently it was changed to mnd due to the progression.

hang in there,please stay with us as with your symptoms you are in the right place.
when is your next neuro appointment?
casually slip in the possibility of it being pls or hsp.
feel free to ask any questions:-D

 

[DBowman]

Hey, cemc...
I had Bulbar onset PLS and it gradually has affected my walking ability, but I still drive a stickshift, go to work, do my shopping and take care of my house and most of my gardening work. I use a walker( the kind with wheels and a seat and a basket-not electric but manual)- I find I can put a lot of stuff on the seat part and transport it around the house or yard or at work. It's definitely worth the investment to get one of these -they really are handy and helpful. It takes humbling yourself to go out in public(at least it did for ME) because you look young but walk like an elderly person.
As a matter of fact, I have a four-wheeled walker I take to work and use around the house and garden AND I have a smaller 3-wheeled walker that I use to "quickly" go into the post office or gas station or in tight spaces like flea markets or local arts and crafts or antique places. BOTH of these fold up neatly and aren't too heavy to take out or put in your car. You may be able to get these second hand!
I went to a speech pathologist to teach me how to "talk" with this. THAT was VERY helpful...I also went to a rehabilitation facility where they tested me and told me I have weak ankles, hips, and shoulders. They taught me exercises to do to strengthen these parts. I'll bet you have dificulty turning over in bed.
It would be SO easy to veg out and sit around most of the time(I could easily do this) but move around every day to keep that connection between your brain and that body part active.
Diane

 

[Zaphoon]

Diane,

"Weak hips, ankles and shoulders" sounds like me but you can also add a wrist to that.

 

[DBowman]

Well, ya know, Kim, before ANY of my other symptoms occurred, I remember reaching for a door knob and I didn't have strength in my hand to turn the door knob...my fingers were curled around the knob but I had no strength in that hand! I tried over and over then after a couple of minutes my hand strength was back! I thought "How wierd" but never gave it another thought. Then the speech thing started happening for me, and the rest is history. And I know now that a weak grip now and then is part of this PLS.
My grip isn't as strong as it used to be but total weakness happens only very occasionally for me...I've also gotten in my car and couldn't turn the ignition key for a couple of minutes....or maybe I've had to use 2 hands to hold the coffee pot while I'm pouring.
Hey, you know what?! If I'm laughing really hard at something, THAT makes me weaker all over only as long as I'm laughing hard. So I have to be careful what I'm doing at the time. Other people that know me are very aware of this and they'll say.."Don't make her LAUGH!"
Diane

 

[Zaphoon]

Diane,

I can relate with all except the laughing; I'll have to try that and see what happens.:smile:

The two-handed coffee pot hold - been there, too! Hasn't happened in a while, though.

This stuff is just unpredictable...

Kim

 

[DBowman]

I may have had the emotional lability thing goin' on for longer than I realized, too.
You see, I LOVE music(all kinds) and when it came to playing classical music...well, there's some pieces that used to leave me a little choked because of their beauty and then I began to shed tears over certain pieces(such as "Sunrise" by Grofe in his Grand Canyon Suite). Well, then THAT graduated into shedding tears over a well put together t.v. commercial(I am interested in the way advertising works...I know, I know...wierd) and now when I hear a favorite rock song I am reduced to tears, now! SHEEESH!
You can't take me ANYWHERE...
But if I am watching a favorite movie with other people in the room, I really STRUGGLE to hide my tears of(usually Joy) from everyone....I mean, I want to SOB! It's exhausting!
Diane