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I Have Primary Lateral Sclerosis

Primary Lateral Sclerosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Primary Lateral Sclerosis. You're not alone. 37 People

    23 March

    Just heard the news, you have primary lateral scerosis.Not sure what that means all i know is i have a hard time walking.I am trying to stay positive and thinking about all of the things i can do , not the things icant do. All i keep saying to myself is it could be worse. 
    23march 23march 46-50 3 Responses May 9, 2011

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    This is my first contact with a PLS forum,

    even though it's been seven years since my first symptom appeared and a year-and-a-half since I got my "official" diagnosis. I'm a 75-year-old widow and, like many of you, was a healthy specimen until this thing came from out of nowhere. I had a Baclofen pump implanted three...
    OzGirl14 OzGirl14 70+, F 2 Responses Aug 4, 2014

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    I was accepted into the NIH undiagnosed

    diseases program in January of 2014. I have PLS also. I keep thinking somehow I can turn this around. Beat the odds so to speak. My new doctor at UCSD told me Thursday that I should do the things in life I want to do NOW. Also informed me that I am not going to beat this...
    christinasperos christinasperos 66-70, F 6 Responses Mar 24, 2014

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    Hello I have had PLS

    for 8 years now(diagnosed at 47). I am 52 now and still have problems with understanding what is happening to me. There are so many different things that have gone on with me and yet none of them neurologist say are related to this disease. I am having a hard time believing...
    Gduke Gduke 51-55, M 3 Responses Dec 12, 2013

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    ...not yet and hope not,

    but they are hinting at it. It started with a diagnosis of stenosis, poor walking and back pain, a laminectomy with no resultant improvement in walking. I have "sort of" drop foot, with the neurologist calling it that but the ortho surgeon did not. It has some life and is not...
    Isaac6 Isaac6 61-65 2 Responses Sep 19, 2014

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    from early childhood my mother said i was

    always clumbsy i help down a job for 22 years as an stna i just started haven alot of leg aches and keep tripping while i tried to walk my mother ust to have to come in to my room and rub my legs beacause they hurt so bad doctors would tell her it was growing pains well come...
    suzzy67 suzzy67 46-50, F Aug 20, 2014

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    I have PLS or so they tell me.

    I feel like I am at an AA meeting or a Gambler's Anonymous meeting admitting to a problem I have. Luckily, I don't have those type of problems, though there is something that addicts can do, while there is nothing that we can do to stop this disease from progressing. We...
    olivesandartichokes olivesandartichokes 56-60, F Sep 4, 2015

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    Primary Lateral Sclerosis Sufferer From Australia

    Hi everyone.  I was diagnosed with pls 4 years ago.  I'm now 43.  I ve always been a good second generation italian catholic boy.  Never smoked, did drugs, i don't drink and never fooled around.  Damm i wish i had my time back again knowing what i...
    viewbank viewbank 41-45, M 7 Responses Mar 15, 2010

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    I Have Pls And I Feel Alone With This Diagnosis.

    i found out for sure i had pls 1-11. my husband died 2-11. i would not have been able to care for him since i need help myself now. i fell on 4-25-13 and fractured my wrist in two places, so i cannot use my walker. i am in a wheelchair now, having pt on my shoulder, then...
    remila remila 70+ 1 Response May 31, 2013

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    I was diagnosed 2 years ago

    and recently I have gotten so much worse. I lived alone and now have live in aids to make sure I can walk safely even with a walker. My speech is very hard to understand and I am extremely depressed and anxious(despite meds and therapy). Does anyone have any advice re my...
    peggytunick peggytunick 66-70, F 2 Responses Jun 14, 2014

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    I started having trouble swallowing around two

    years ago and it was getting worse last year (2014). By the end of the year I was noticing changes in my speech. I then lost my job (coincidence?). It took some time to line up Health Insurance but by February I was seeing doctors and in March of this year I was diagnosed. The...
    deleted deleted 26-30 1 Response Nov 18, 2015

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    Diagnosed in 2002 with ALS then went to Mayo in

    Rochester, they said after 2 weeks ,no ALS ,we don't know but no ALS ,went back home doctor says PLS . All I can say is after all this time is Autoimmune ,as it seems to go slow .
    conniegeo1 conniegeo1 66-70 1 Response Feb 8, 2014

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    I Have Primary Lateral Sclerosis

    I'm a new member to this website. I thought I'd join in hopes to connect with others living with Primary Lateral Sclerosis. I was diagnosed with PLS in 2006. It seemed to come on out of nowhere. I began feeling a strange buzzing feeling in my feet and legs, it was very annoying...
    mmk7 mmk7 56-60 2 Responses Jul 24, 2013

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    Preliminary Dx Pri

    I had opened an account as pinkglasses, but try as I might, I could not log into it. I received a message from FUNGIRLMMM, but I couldn't read it cuz I couldn't log in. If you see this, please try me here. I would love to talk to someone with this "thing." I'd known something...
    roseglasses roseglasses 51-55, F 3 Responses Feb 23, 2012

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    Just recently found out I have PLS.

    I knew something was wrong and like many of you were looking in other medical directions for answers. I do feel fortunate that somehow (I'm sure by God's hand) I ended up with a neurosurgeon who insisted that I see a specialist (another neurosurgeon) at Miami University Hospital...
    PGMasters PGMasters 51-55, F 2 Responses Oct 24, 2014

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    PLS Diagnosed In May 2012

    I am a white female in my mid 60's, and I have no voice. Otherwise, I am fairly healthy. My PLS/ALS specialist insists that I let her install a PEG even though I am still able to swallow. I am scared-to-death! Can anyone share an acceptable alternative? Also, would anyone...
    PatriciaDodson PatriciaDodson 66-70, F Sep 28, 2013

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    Very Fustrated!

    I was diagnosed with PLS about 1 month ago . After 2 MRI's , CT scan , A SPINAL TAP and several blood tests the Neuroligist determined that by a process of elimination that I have PLS . I have gone from going to the gym 3 times a week and working full time to being unable to...
    Deroy Deroy 46-50, F 2 Responses Oct 16, 2013

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    PLS

    Just diagnosed finally yesterday. At least now i can actually call it something! A year of wondering and no answers has been the most difficult part. I can deal with the symptoms better now that i know what i'm dealing with! Bill
    martin56 martin56 56-60, M 2 Responses Apr 30, 2013

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    Why Is This Happening

    My name is Kevin G. I live in Lynn Ma. with my wife/partner of 20 years and our son who turned 18 in Jan. Late 2009 into early 2010 I noticed a tremor in my right hand. It was starting to get worse when my doctor recommended I see a neurologist. After a series of standard...
    golf4kev golf4kev 51-55, M 4 Responses Apr 13, 2013

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    I tried explaining to my mom over the weekend why I don't want any kids. There are many reasons but all my mom says is "you are in a bad financial situation now, you will change...
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    would love to have a conversation with a nawty mind right now...
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    My name is Tiffani and I am looking for another person with KSS for my brother, Keith. He is 42 now and was diagnosed at 24. He started showing signs in his late teens, first by...
    Tiffanimorgan Tiffanimorgan 18-21, F 42 mins ago

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    Yeah! I've been blocked by a homophobic, misogynist, narcissist! Try and have a ration discussion with a troglodyte and that's what you get! Oh his venom was flying! I admit I...
    JoanieNewHampshire JoanieNewHampshire 61-65, T 1 Response 1 hr ago

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    Yes, I have a nudist family as does my girlfriend. Everyone in my/our family is a home nudist & always have been. Everyone in our families is & has always been open-minded...
    theswordinthestone theswordinthestone 41-45, M 1 Response 1 hr ago

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    I remember being in the last year of high school and being one of the skinny ish kids and i used to go shopping for clothes in normal shops now i have to go to plus size shops to...
    bigchubbygirl bigchubbygirl 18-21, F 1 hr ago

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    I wasn't going to post this but one of my friends kept telling me I should. He thinks it'll help me get over it and be less embarrassed by it, I don't know though. I might not keep...
    FindTheBlue FindTheBlue 18-21, F 1 Response 1 hr ago

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    This world isn't for the soft people, you have to fight every day for your existence. Existence, yea which people tend to forget unless you are popular, good looking and most...
    shaundskr shaundskr 16-17, F 1 hr ago

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    account got deleted again lol...if you need that in Orlando or the surrounding area feel free to message me and I'll take care of you asap. I have nothing but good reviews on here...
    SUFFER407 SUFFER407 26-30, M 1 hr ago

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    He's not my boyfriend but we been "hanging out" with each other for years now. and now that I have my own apartment it's easier for us to "hang out, so this weekend is gonna be the...
    AiymaSnikies AiymaSnikies 22-25, F 1 hr ago

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    I have my own Valentine's tradition, albeit a lonely one. Every year on the weekend of Valentine's I like to dress up. I pretend that I have a date to go on, and that I need to...
    Mephistos Mephistos 18-21, F 1 hr ago

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    I've been working for many years on goals that will reach a pinnacle the year of my 50th birthday. It's only appropriate to have a celebration to end all celebrations!I'm not...
    KatsKorner KatsKorner 46-50, F 1 hr ago

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    Sometimes it feels like someone else (someone nasty and incredibly perverted) is in charge of my mind and body while the real me is just watching, trapped and powerless on the...
    celvorius celvorius 26-30, M 2 hrs ago

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    When I walked back in, you looked surprised. I was surprised too but I didn't show it. I was surprised by myself, a year ago I never would have even been able to talk to you for...
    AmberTheShyGirl AmberTheShyGirl 18-21, F 2 hrs ago

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    Most people only see me in my briefs in my dreams they always have something to talk about though like its cool you know. I think so too because being in my briefs is kinda...
    MaxwellMoonHoof MaxwellMoonHoof 18-21, M 2 hrs ago

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    After eight months of going through the bureaucracy of our health system and waiting for their approval, I finally had the chance to see a new neurologist. I was excited, yet...
    silentwriter180 silentwriter180 46-50, F 6 Responses 2 hrs ago

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    I have such bad anxiety. it's never been this bad I'm having pain in my left arm and consistent headaches....I'm always so exhausted because I can't sleep at night and before I hit...
    deshhh14 deshhh14 18-21, F 1 Response 2 hrs ago

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    gosh life is super hard without a phone ive been asking for almost 2 years know but seem like im still not old enough or there just stalling because they think ill become a bad kid...
    ohhimlonely ohhimlonely 13-15, M 2 hrs ago

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    4. Sometimes I wonder where my life would be without the internet and communities such as EP. For as long as I can remember I have always used the internet as a platform for...
    TatlerAmbition TatlerAmbition 70+ 3 hrs ago

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    I have light blue eyes that sometimes look a bit greyish :)
    Arinalowell Arinalowell 18-21, F 1 Response 3 hrs ago

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    My lab is much more than just a "dog", he actually works with me and has a bedroom of his own. BUT this sucker follows me every single place I go even in my house. I find myself...
    TennesseeWhiskey TennesseeWhiskey 41-45, F 2 Responses 3 hrs ago

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    The more time you spend bitching about your life, the less time you'll have, to do something about it.
    LucyFuhr LucyFuhr 46-50, F 4 Responses 3 hrs ago

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