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jennibf

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My doctor mentioned PLS to us the other day. He said he is ninety percent certain that it is not ALS but has been thinking along the lines of PLS. I also had a brain MRI w/ contrast to see if there is indeed a small spot on my brain stem because he saw something there with the regular MRI. He's also considering a form of Muscular Dystrophy.

I have an appointment at a teaching hospital on December 23rd.

Anyway, I was wondering if anyone would share their symptoms and tell me about pain.

I've had:
hip pain
neck pain
fasciculations-everywhere (just annoying at times)
migraines
MUSCLE CRAMPS when walking a lot or at the end of a busy day. They are killers.

My legs are the worst, they just do not want to cooperate and it's so annoying, like going from sitting to standing or going up and down stairs or a major grocery shopping trip, etc.

So what are your symptoms?
 

kevinw

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My symptoms were:
-Started in my left leg & foot (my foot would scuff and I would trip over the smallest things).
-Then I noticed that my legs (both) were getting stiff as boards at times (when it cold, when I was nervous about something, or when I would try to run).
-Aching, tight, pulled muscle pain in my legs when I would do to much during the day.
-My walk got wider and I must have started swinging my left leg out more, because I could start to feel the pain in my hip muscles.
-My balance became terrible, not only walking, but on steps and when I would try to kneel down to look at something or pick something up (felt like I was being pushed over).
-My walk became more a series of stumbles, stiffness, and at time "rubbery" feeling in my legs (it's amazing the amount of feels the legs can go thru depending on what your doing or the situation your in).
-My only problem with my arms, is my left hand does not have the coordination that I used to (like trying to hold something I can't really tell how much pressure I'm putting on it. Also, if I try to scratch my face or something it might miss my target and I cannot really apply the pressure that I want (strange feeling).
-The fingers on my left hand get stiff at times, like when I first start to type they don't have the range or movement they used to.
-I also get fasciculations & spasms everywhere, it more just seems like the muscles is nervous or confused (some last awhile and some just a single twitch).
-I have also had migrains since I had started in an autobody shop back in the mid 90's.

Sorry for the long list, but this is my list of problems that started two years ago this coming winter.
 

kevinw

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And a quick story (sorry)

My 13 year old son saw my trouble walking and how I felt by the end of the day and did something I'll never forget. He had been earning money cutting grass with my father and had saved up $250. My father had found a basic battery operated scooter and my son insisted on giving him the full $250 that he earned and my father made up the balance to buy me the scooter.

No matter what happens to me "I will never forget the joy on my sons face" when he gave it to me. He was so proud to try to help how I feel that he never even thought about spending the money on himself. He asks me at least once a day how I feel and he is so happy when I use the scooter.
 

jennibf

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WHAT A GREAT SON! He obviously has wonderful parents, too!

I have trouble on the left side as well. My left leg is the weaker one although my right leg gives me problems, too, and has the most fascics right now.

I am wondering how long it took to get a diagnosis, what your EMGs were like, just the whole story of your PLS since it sounds so similar.

Thank you for replying. My doctor is also looking closely at my brain and muscular dystrophy but I'm leaning more toward the PLS although as I said HE was the one that mentioned PLS.

Oh and I trip over wrinkles in the carpet and my feet drag somewhat on pavement although I don't notice the pavement thing until I hear the dragging or someone looks.
 

kevinw

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Well, I had leg problems for over a year before my family finally made me go to the doctors. I noticed problems in the winter of 2006-2007 with steps and bleachers at my daughters basketball games. I just thought I was out of shape, getting old, or that it might have something to do with my high cholesterol and circulation in my legs, so I didn't say anything. Then during vacation in the summer of 2007 I was always tired from walking and unsteady (I still didn't say anything), but my wife had made the comment of "no wonder your always tired your walking with such heavy feet". As I was walking it was like my feet were just flopping with each step as my legs were getting weak. Well the summer went on and I noticed things at work that didn't seem right. Sometime I would hope down off the back of my truck and my legs would just fold under me and down I would go the ground. Also I was tripping a lot with my left foot over small things in the bodyshop, like air hoses and stuff I would try to step over. Then fall and winter came and I continued to have problems while trying to hunt, work, and just be on my feet in the cold in general. I finally told them I would go the doctors after the new year. I had my local doctor exam me and he didn't like what he saw to start with, so he wrote a script for me to see a neuro and put on the script to "eliminate ALS" (I had no idea at the time what that was and it never crossed my mind to even check into it). So I went to a neuro and he did his exam with some concerns (he even called in someothers in the office to see the symtoms). He ordered all the tests: a ton of blood work, a couple MRI's, an EMG, and a Lumbar Puncture. Everything came back negative. So he had interned under a very good ALS specialist in Philly, PA and said he would talk to her to see if he could get me in to see her (I think he felt like it beyond anything he could do and wanted this specialist to take over). That was when he first mentioned PLS. Then I met with her in March of this year and she did her exam and some more blood work. After months of seeing these doctors and all the different tests she diagnosed me with ALS due to some of the muscle spasms and weakness that she noticed during the exam (but wants to keep an eye on it for possible PLS, like she said the more time that goes by the better). Anyway, I feel like I have been very lucky with the doctors I've had and the overall process. I have a family member that works in the hospitol that my first neuro is at that ordered the first set of tests, and I was able to be put right on the schedule for the MRI's and Lumbar Puncture (no delay's). So now I keep doctoring at a MDA/ALS clinic and see the full team each time.
 

jennibf

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I feel I am getting lucky with my doctors as well, partly because my husband's dad was the former administrator of the hospital my neurologist works out and friends of friends.

Your symptoms sound all too familiar. My left arm gives me some trouble, not a whole lot, especially in comparison to my leg.

What about your neck? Maybe I missed it but my neck aches off and on, particularly when I turn my head or maybe I'm just strange?
 

kevinw

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The only problem I have with my neck is when I have the start of a migraine. I will start to feel the tightness and pain up the back of my neck and if I don't catch it in time to lay down it ends up being a full-out migraine that seems to settle behind my left eye. If I can catch it and I don't ignore it and think it will go away, I can lay down with my head propped up with two pillows (the top one propped up so my neck cradles right into it with pressure on both sides of my neck) and close my eye's (it will usually go away). But sometimes if I feel it start in the morning I just try to ignore it and hope that my neck muscles will loosen up and not turn into a migraine (that never works, and I don't know why I think it will), it just ends up turning into a painful day.
 

sral

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My mom too has complained of headaches in the past few months. Her ALS neuro said that it was most likely due to increased spasticity.
 
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