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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. 34 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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    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 1 Response Jun 14, 2014

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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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    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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    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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    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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    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 5 Responses Mar 24, 2014

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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 6 Responses Mar 15, 2010

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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 Feb 8, 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 2 Responses Dec 12, 2013

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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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    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 1 Response Aug 4, 2014

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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 Oct 24, 2014

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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 Sep 19, 2014

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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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    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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    I am that daughter, wife, sister, mom... I have always been the one to take care of everyone, it has always been my role. I'm the strong one in my family, I have 7 older brothers...
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    katsuobushi katsuobushi 36-40, M Mar 13

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    I'm allergic to dust, seafood, cold, and fur. I can't be near dusty place, otherwise I don't stop sneezing all day until I lost my voice. In primary school we have schedule to...
    indahnesia indahnesia 18-21, F Mar 19

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    I guess it's an issue that stems from childhood, and has sort of followed me ever since. I was bullied in primary school. Looking back on it now, it probably wasn't as viscous as...
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    This is going to be quite long so beware. He was my Art teacher, let's call him Sensei as he is half-Japanese and I don't feel like revealing his name. But he teaches me Art back...
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    Girls with straight hair don't know how easy they have it. -_- The fact that I actually have to "do" my hair every morning in order for it to look it's best is annoying...
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    I am in 8th grade and most of my friends have dated or have a girlfriend, what should I do or how do I become friends with a girl?
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    I just got transferred from one community mental health center to another, and today the new psychiatrist asked me what I was diagnosed with during my last hospital stay. I said...
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    As I go about my daily run its my relationship that is running through my mind, how did it degrade to what its become? How could I make things better? Do I want to try and save it...
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    I have a few great friends that I have never met. Best friends* each message from them reminds me that I am not alone, but it hurts when all I need is a hug and no one is here...
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