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barbadosslim93

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Messages
6
Reason
PALS
Country
US
State
Michigan
City
Midland
Hi everybody, I wanted to take the time to introduce myself to you because I am being personally affected by this PLS stuff. I figured I would tell you a little about my backstory and let you know where I am coming from with all of this. I hope in the future to get to know all of you and maybe find some new information on this disease.

I am a 28 year old guy from Michigan who has been having back pain for about a year and a half. Recently it started getting worse, and I began having some issues with balance and other motor skills.

As an example, I have fallen twice in my driveway this past winter when it wasn't icy out, I stumble and trip up and down the stairs, I will be walking and lose my balance and fall into things like the wall or fridge, and just overall have a clumsy feeling with my legs. I often times get a weak feeling in my legs that cause me to go down a tad before I recover.

I have also been dropping things an awful lot. My keys and dishes are my most frequent victims, but I often times have issues with other stuff as well.

I ended up being referred to a neurologist who gave me a series of MRIs (brain and neck, with and without contrast), and ran me through the nerve conduction test as well as the standard hit you with the hammer reflex deal.

I went for my follow up visit this week and he said he believes I may have PLS. My reflexes are what he calls VERY brisk, my MRIs don't show much of anything, and my balance and speed of some motor function tests are sub par to what he is expecting.

He is sending me down to U of M in Ann Arbor, Michigan to be seen by another doctor, but he says he has only seen 2 other cases of PLS since he began practicing. I am led to believe this is quite rare.

This is where I am at right now: I don't know too much about PLS because there isn't really a lot of information about it. I want to get to know you guys and see if maybe our experiences mash up.

Is it true that PLS is diagnosed by a process of elimination? If so, does that mean that if they can't find anything else that I will be officially diagnosed with it? I hear it can take a long time to be diagnosed, and I am really in the dark here.

What am I looking at in terms of life with this thing? Its a lot for me to take in, and I am really just looking for some information.

Thank you so much for taking the time to read my novel! Sorry that it is so long.

I look forward to getting to know all of you.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
Hello, sorry you are having tojoin the club. I don't know alot about pls except is seem to progress slower than als. Sorry. I am sure other will chime in as there are several here that have that diag nosis.

any of the neuro/muscular diseases diag nosis is a process of elimination since they all kindof mimic each other. Yes it does take a while. Some people it takes months and others years. I found out after 5 years of being tested and poked. You will learn patience on this journey.

I wish you peace. Hugs.
 

barbadosslim93

New member
Joined
Mar 8, 2013
Messages
6
Reason
PALS
Country
US
State
Michigan
City
Midland
Thanks for the response vickim. I look forward to seeing what everyone has to chip in here. I am definitely new to all of this and looking to absorb any knowledge I can.
 

johnnyliverpool1

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Jul 5, 2011
Messages
473
Country
uk
State
moved back to blighty
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baba. i will chip in here.......pls is umn stuff...i.e. hyper reflexes, clonus spasticity, babinsky sign ,,,,,,but you will know all that through google.........its so rare that in britland neuros are divided on wether it even exists....a diagnosed by exclusion , but everything cant be excluded.....could be a minor stroke for instance...but no stroke evidence to confirm...a diagnosed with a question mark is often the way.....well hope ive given you food for thought, good luck, johnny..
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
HELLO:)
Welcome to the forum,28yrs wow and i thought i was young getting it at 31yrs.
Good news is 14yrs later i can still walk a bit,do a bit.......can't complain really.

It is scarey at first with not knowing anything or whats going to happen in the future .......but theres far worse things than pls.

A diagnosis usually takes 3-5yrs of watching.......though with some its sooner/later.
We all worried about possiblity of als but if theres no lmn signs after 5yrs then it is pure pls.

Dropping things was the first thing others noticed before i got leg spasms or realised i was ill......think it was hyerreflexia in arms that must have caused it.....no weakness or spasticity at that time.

Its very late here but tomorrow i will post you a few good articles on pls.

Barbados.....sun,sea,coctails....johnny will back me up,this time last year we had a mini heatwave....that was it! wash out summer,cold depressing winter and to put the icing on the cake.............spring is nearly here and we have snow forcast for next week:shock::(:cry:
Dont move to england:roll:
 

AKmom

Senior member
Joined
Jun 2, 2010
Messages
606
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
Welcome, sorry you are having to go through this at your age. I was in my early 30's when I started falling while running. I was a soccer coach and very active and fit when I started noticing weakness in my right leg. Fast forward 16 years and about 40 docs later and I finally get pls as the answer. So now I am 20 years into it and use a power wheel chair about 98% of the time. The other 2% is to walk short distances in the house from point a to b to sit down.

My advice to you is to 1. Always get copies of your medical records and take them with you when seeing a new doc. 2. Do all you can do to live life to the fullest while you can still get around easy. If you need a cane for balancing, then use it. Put your pride aside and stay safe. I have broken 7 bones in the past 20 years from trips and falls (including) a hip. So its better to be safe than to cause injury to pls. Hope you find your answers soon!
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
It sounds like he's basing it on the uMN only issues at this time. Lots of things can cause UMN symptoms. As I understand it, PLS takes 3-5 years to diagnose.

I see a brain MRI was done--but was a spinal tap? MS isn't always seen in the brain -- lesions can heal or not show up yet in MS. (MS also affects UMN areas)

You don't mention the spasticity usually associated with UMN--are you not having any of those issues?

Hopefully, they'll get your sorted out--but PLS is very, very rare as several said. It's not generally one of the first things considered.

If it is PLS--you aren't going to keel over in a year or two...it's not considered 'fatal' as other things like ALS are. It does not shorten the life expectancy at all.
 
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barbadosslim93

New member
Joined
Mar 8, 2013
Messages
6
Reason
PALS
Country
US
State
Michigan
City
Midland
Hi notme.

I am waiting on getting a referral down to U of M to see another specialist and have more tests down. I was told that once I get down there that I would more than likely be getting the spinal tap.

As far as what little I know about spasticity, I do believe I am having the symptoms. If I recall my last appointment with the neuro, he said that this PLS would explain the tightness and pain in my back as well as my legs.

I agree with the PLS not being the first thing considered. When I asked my doc about other possible explanations, he made it a point to tell me that he had taken the time to try to rule out other explanations and with what he keeps seeing points out to possible PLS.

Blah.
 

DBowman

Active member
Joined
Feb 14, 2007
Messages
74
Reason
DX UMND/PLS
Country
US
State
Virginia
City
Harrisonburg
Hey, Barba'.............

They'll check your spinal fluid to see if there's any evidence of MS.........with PLS your fluid should be OK. It took several years for them to diagnose me with PLS as with ALS things come on very quickly. Usually symptoms that take about 5 years to come on (like Olly said) point more toward PLS although there are other neurological diseases out there as well.

Mine started at a bulbar level with a slurred word here and there......then I started tripping (toe-dragging) and being easily toppled over (weakened hips)...it also got harder to turn over in bed. It felt like I had no hips and that my middle went directly into my legs (as if I had no hips)...thus the feeling of no shock absorbers in my legs....kinda like walking like a stiff wooden soldier.

Occasionally the strength would leave my hand while holding my coffee pot or trying to turn my car keys.....but would come back as suddenly as it left. I laugh and cry more easily and at wierd times over insignificant things (like TV commercials). Beautiful music that I love can make me cry......if I start laughing it's hard to stop sometimes....

I have little facillations (like mini painless muscle jumping) anywhere and everywhere all over my body ...usually every day. Any actual muscle cramps feel like the bone is cramping as well....way worse than the "charlie horses" of childhood.

I do have hyper-reflexes....when a doctor runs his finger down the length of the bottom of my foot my leg jumps like crazy.....my knee/jerk reflexes are still quite good, though. My doctor checks the plumpness of my tongue and when I see him he makes me waggle it from side to side to make sure it is flexible and active. He checks my eyes to see how far left and right they can move while keeping my head in one place....He has me close my eyes while standing to see how well I keep upright......he watches me free-walk (even though I rely mostly on a walker or cane). It's not my legs where the weakness is...it's my hips. He'll check the strength in my hands and arms....

Well....I've been through the electrical conductivity tests and am glad I don't have to do THOSE again....I just go to my neuro now every 6 mo. and he checks some things, smiles and says good-bye 'till next time....he can't really DO anything FOR me....I've been on Rilutek ever since my diagnosis......Medicare is making it hard to afford now....but if U R on any insurance plan that has a prescription plan ask your neuro about Rilutek.

God Bless!
 

johnnyliverpool1

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Messages
473
Country
uk
State
moved back to blighty
City
britain
man..you get to love yer clonus...exercise whist sat in your armchair....and yer spaz is good cos without it you wouldnt be able to walk...stiffness could be better, but it missed out were it would av been useful.....use your hyperreflexes to chuck a beer over your mates for a laugh...and babinski for a party trick......slapped foot plays out a nice tune on a tiled floor......i could go on.....what joy....johnny
 

barbadosslim93

New member
Joined
Mar 8, 2013
Messages
6
Reason
PALS
Country
US
State
Michigan
City
Midland
Johnny, my friend used to call me twitch because they loved seeing how my reflexes reacted when they prodded me. Always very exaggerated with the knee stuff and such. They would also love to sneak up on me and scare me for the messed up reaction they would get from my jumping and spasms.

This of course was before anything was "wrong" with me. Now I can rest assured that they will try to do it even more.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hey if you can laugh--why not?

Give 'em a show!

As said, there isn't much to do for PLS but watch to be sure it doesn't TURN into ALS with accompanying LMN signs. UMN only is better--any deterioration takes longer than in ALS.

I think there are days I wouldn't walk without spastic legs--or stay upright. Of course--now that I'm falling all the time, I can't say it's helping me a whole lot recently. But hey I have great muscle tone--my legs look like I exercise daily to keep my muscles all nice and hard--NOT.

one that that DOES help me, though, (and I do have diagnosed UMN syndrome of some sort) is walking. Last year before I stopped falling, walking helped a lot with pain. I was walking a mile a day up til last November. Used my walker--but I walked. Got a treadmill so I could have something to hold on to when walking outside became dangerous.

As for the Rilutek--to my knowledge it's only indicated in ALS--NOT PLS.
 
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johnnyliverpool1

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uk
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moved back to blighty
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ah..the startle reflex, absolutelly hilarious......for those watching.....what fun......johnny
 
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