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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. 35 People

    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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    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 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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    ...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 1 Response Sep 19, 2014

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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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    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 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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    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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    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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    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 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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    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 1 Response Oct 24, 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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    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 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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    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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    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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    Related Experiences

    It seems when I am here with my friends I am either crying or laughing so hard I pee my pants. O.oBut whichever I am doing I am glad I'm doing it with y'all crazy whackados! So I...
    pinkstarburst pinkstarburst 41-45, F 2 Responses 40 mins ago

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    I have Social Anxiety, not too bad but some days it's like I'll want to be alone / independent (at home where there are not many people) but then like most days I'll always try to...
    ComicGeek ComicGeek 13-15, F 1 hr ago

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    My dad is really strict.He doesnt even let me go out in my town.I havent seen my friends in over a month and the fact that almost all of my friends are boys doesnt help.
    PYazmin PYazmin 13-15, F 1 hr ago

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    After a near 3-year search, and many prayers, I believe God has selected my next wife. Physically, she is not what I would have imagined. But with a radiant face and personality...
    SlickTenn SlickTenn 61-65, M 2 hrs ago

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    Born to Get Dirty Tee Heee Heee Heee, Oh Hi There, Mud Fans, For those of you who don't know me, My name is Kelly and I am one blue-jeaned country lady who loves to get what ever...
    SapphireDenimKnight SapphireDenimKnight 56-60, F 2 hrs ago

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    I found out in July, after being 2 years Tumour free, that I have another brain tumour. Tomorrow I have to make a big decision. I'm going to a leading cancer hospital to talk about...
    NikitaB936 NikitaB936 18-21, F 2 hrs ago

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    I was signing up for my classes and i started thinking how the whole scenario in me being there will play out. Feeling so anxious, my heart racing, slowly getting sweaty. There are...
    reversethetime reversethetime 18-21, F 2 hrs ago

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    12 years ago during a fourth of July boxing event my roommate and his friend organized. Girlfriend of one of the guys who showed up to box was very verbal during his spar with me...
    CelticBoxingGuy CelticBoxingGuy 41-45, M 3 hrs ago

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    Is it bad that I have naughty feelings to my mother in law she only 51 and she has a fit body for her age I start looking at her a sexy way as at the weekend we were our doing...
    Cheekymonkey74 Cheekymonkey74 36-40, M 1 Response 3 hrs ago

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    I've never been drunk. I have never done drugs. My father is very strict. Growing up, I was legitimately scared of him. I still am. He is particularly sensitive about alcohol...
    Storiesnotforthefaintofheart Storiesnotforthefaintofheart 18-21, F 1 Response 3 hrs ago

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    I am not new to ep but this time around I'm going to screen you before I accept you as a friend. I have been burned and it won't happen again.
    tippy11 tippy11 51-55, F 2 Responses 4 hrs ago

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    I've posed for pictures with Iv'ry Soap, I've petted stray dogs, and shied clear of dope (I've petted stray dogs, and I never mope)* My smile is brilliant, my glance is tender But...
    thehippy thehippy 41-45, F 1 Response 4 hrs ago

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    I might get a lot of hate because of this, and some people might even dis me for what I'm going to say for not so obvious reasons. But I loved Scar more than I liked Mufasa...
    ashfaaqb ashfaaqb 18-21, M 4 hrs ago

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    Usually because I feel like I have so little control over my own thoughts and actions. I'm a lazy, undisciplined mess. I kinda want to go to therapy to tackle some of my issues...
    mikowee mikowee 31-35, M 4 hrs ago

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    It's a miracle, I have a boyfriend. God knows what he sees in me, but I hope he never stops seeing it. ??
    Thatgirlannalise Thatgirlannalise 16-17, F 4 hrs ago

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    I am looking for a friend, gender/location/age doesn't matter as long as you won't hurt my feelings. I'm struggling with eating disorder and anxiety. I can be supportive and my...
    veronicarosy veronicarosy 16-17, F 3 Responses 5 hrs ago

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    "Listen to your inner voice, listen to your intuition, - it is always well-meaning and available 24/7 - pay very close attention, hear every word that it is saying, ...see what...
    Injoy1767 Injoy1767 46-50, F 5 hrs ago

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    When everyone in my third grade class were buying new games and stuff like that i was helping my mom take her medicine. My mom got diagnosed with Lupus in 2007. After that...
    Leannabj25 Leannabj25 13-15, F 1 Response 5 hrs ago

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    You know, the people who really suffer rarely tell people how much worse they have it than others. It's people who don't live with the pain who say things like "Well, your cousin...
    emperornorton47 emperornorton47 56-60, M 5 hrs ago

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    This is a long story.... Just before beginning of the school year this year this guy added me on Instagram he was native like me n he lived in the same area I was living in. So I...
    cassie200015 cassie200015 13-15, F 6 hrs ago

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    I checked this as an experience because after one lousy date last year I quit trying to go out and accepting advances I found so many movies to watch and TV shows I missed I found...
    barefootbeach barefootbeach 22-25, F 7 hrs ago

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    It's official I have a boyfriend. I still don't understand what he sees in me. But apparently he like it. I hope this last longer then my other relationships.
    escape1424 escape1424 16-17, F 1 Response 7 hrs ago

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    I'm blessed to live the life I live 🙏 I was born into a functional family full of love. It's not even about the money or materials we have . I'm just grateful for the love...
    Slayoncee Slayoncee 16-17, F 7 hrs ago

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    With a quick and massive weight gain, saggy boobs quickly follow, I don't mind, just wish they didn't have stretch marks.
    FatGingerDyke FatGingerDyke 22-25, F 7 hrs ago

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    We have been together for over a year and I half, I love her so much.
    FatGingerDyke FatGingerDyke 22-25, F 7 hrs ago

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    Today Again you were in my dream. We both were chatting. you seemed upset . You were telling me the difficulties you are facing in your life.You were telling me about your mum.You...
    lovemylife2210 lovemylife2210 26-30, F 7 hrs ago

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