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Willy.Fouts

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My timeline, help.

Hello I am new to this forum and forums in general. All feedback would be appreciated.

I am unsure how to pour out all my details. So here we go.

As of right now I am undiagnosed, but my neurologist is comfortable with calling it PLS.

To date: I have a hard time bending my knees when I walk and just lifting my knees in general up and down the stairs. My feet are constantly cold. I can't wiggle my toes, and I can hardly move my ankles. I can only lift the heel of my foot and the back of my leg all but just a couple inches off the ground. And when I step off a curb or walk down the stairs whatever foot is last slips off. I also have very poor balance and without my hands would be on the ground constantly. My lower back is very weak and aches. Below is a little timeline I have. However I can recall occasions as far back as when I was 10 or 11. But this is where I believe the onset started.

-summer of 2011: I went for a run on the track. I was able to run only 2 laps before my feet would start slapping the ground. i was unable to run any further and was unable to lift my knees. At the time I did not think anything of it, just thought I was out of shape.

-fall of 2011: I would play pick up basketball at my gym and was able to run up and down the court. But I was very slow and couldn't move to my side to catch a bad pass. Once again the only thing I was thinking was that I was out of shape.

-winter of 2011: I came back from college and would play basketball with my friends. This was the last time I even attempted to play any active sport. I was unable to run at all, and could not shuffle my feet side to side, let alone jump. Still the only things I was thinking, was that i really need to get in shape. After that I would go on the same track at my high school and attempt to run. This time I was only able to run a half lap before my feet would slap the ground. I also tried to run sprints, and I would end up falling over from letting my upper body get to ahead of myself.

-January 2012: I was in a car accident and hurt my groin. Before the accident I walked completely normal and fine, but after I immediately started walking with a limp. After I was heeled from my pain, I thought I was back to my norm. However others would comment on my limp that I was walking with. At this point I couldn't stop walking with a limp. But I could still walk fine at a good pace with good balance. It just looked funny.

-March 2012: I finally decide to do something about my limp. So I have Xray's done. They come back normal, and for some reason I had bloodwork done as well and that turned out that I was anemic as well as having a low WBC. I figured that was because of my poor diet in college. I am no longer anemic, but still show to this day to have a low WBC.

-May 2012: At this point I am no longer able to run more than 20 feet and am starting to trip from walking. Not tripping to the ground, but just tripping and losing my balance. I also am starting to feel the early stages of spasticity. But just from when I would wake up in the morning.

-June 2012: I return home from school and start talking to my dad about my issues. I mention that my feet are cold and feel numb.

-Summer of 2012: Finally I knew that something was wrong, I wasn't just out of shape. Over the whole summer I started doing the Insanity work out video. Obviously not being able to do all of the exercises, but I was able to do some. I was working full time, and really just had sort of a limp and a drop foot action in my gait along with spasticity.

Than there was a good 4-6 month plateau in the progression of my symptoms. Every thing stayed the same, leading me to think that it may not get any worse.

January 2013: My PT points out that my lower back is very weak, and I start to take notice of my poor posture.

February 2013: I finally start to take baclofen, which at the time did wonders for me.

May 2013: I have my ITB trial to help combat my spasticity. I also by myself a cane to use when I am out and about with friends and others. However I would manage without it when I was by myself.

August 2013: My balance at this point has progressed since the beginning of the year to the point where I need the cane full time. It is also where I start to notice my back getting sore and aching.

On January 6th I will be getting the Baclofen Pump.

Is this at all similar to anybody else?

Thank you for taking the time to read it.
 

Willy.Fouts

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Not sure if everybody read my previous thread, but I didn't do a good job of asking when your or your loved ones PLS started?

I'm only 20, but I feel like whatever this is it has slowly gotten worse from when I was as young 10-11 looking back. However nothing was to my knowledge until just about 19 months ago.
 

Bad Balance

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Yes, it begins long before you realize it
 

Tokahfang

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There are a few of us, Willy. You should know that your age of onset is odd. You, Dutchie, TxRR, and I are statistical outliers, pretty much no matter where our upper motor neuron damage turns out to come from. The most common time for PLS to set in is at 50+, and the range for normal adult onsets start at 30+. Other things that damage the upper motor neurons are similar or are instead very young onsets, say birth to 6ish.

The experience of handling this kind of thing starting at a younger age is a little different, overall I would say easier than a traditional adult starting date. You know about the problem before you start your professional life, you can make career choices understanding that full able bodiedness is not the default assumption for you. It is easier to learn new techniques for living, over and over again if need be. You don't already have a spouse and kids to spring this on, whoever you marry will be going into the experience knowing what they are doing. There are a less things you are expecting to be a given, so there is less to grieve. It is like knowing you are starting a video game on hard mode instead of getting attached to your save file and then having a bug stick you on hard mode half of the way through.
 
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goolia75

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My sister-in-law has MS and your story sounds a lot like hers. Have you had an MRI of your brain and spinal cord?
 

Willy.Fouts

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Hey folks sorry for the late response. And yes I have had both MRI's of the cervical and the brain. Both of which according to my neurologist showing that I do not have ALS and from the spinal tap do not have MS.

But you are absolutely right Tokahfang, I definitely never thought about it like that. Thank you for opening my mind a little bit more.

I'll try and be more consistent on the forum for conversation.
 

IhavePLS

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Willy,

Where you say: "June 2012: I return home from school and start talking to my dad about my issues. I mention that my feet are cold and feel numb."

...this caught my attention, because it is my understanding that folks with HSP tend to have peripheral symptoms (neuropathy) in addition to the symptoms that are typical of PLS. Do you have a familial history of the symptoms you describe above?

Mike
 

IhavePLS

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A couple of additional thoughts, Willy:

1) I'd suggest that you be very sure that baclofen is working for you before you get a baclofen pump. I speak from similar experience - I have a spinal cord stimulator. Having a permanent implant -- metal or other -- in your body is more significant than you know. If baclofen works, fine....but just be 100% sure that it is is working for you! :)

2) There is discussion in a different thread concerning the "plateaus" - Olly responded to me re: a question I raised about this very issue (her insights are always remarkably spot on). Sorry, I cannot recall name of the thread, but you can search using my screen name (IhavePLS). I had this same question -- it was answered beautifully.

Take care!

Mike
 

Willy.Fouts

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Thank you IhavePLS, I'm sorry for responding so late. But I will definitely look through your reference. Thanks again..
 

Bad Balance

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They should do a trial run to insure the pump will work for you.
Also of concern, is how your spacicity is now assisting you in your strength and movements. I have read accounts where someone went in walking but came out wheelchair bound.
You are stlll quite ambulatory. You have some time to make these decisions, no?
 

BLPhill

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You have to have the baclofen pump trial before medtronic would agree to put one in, this is how they tell wether or not the pump would help you or not, its a requirement. No DR or neurologist can say yay or nay to any motor neuron disease by looking at a mri.
 

Bad Balance

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Progression is not truly linear, but with 3-4 data points they can see how you are trending . Press your dr to look at your strength and breathing over a period of time
 
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