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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

    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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    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 2 Responses May 9, 2011

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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 1 Response Apr 30, 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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    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 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 Jun 14

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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 3 Responses Mar 15, 2010

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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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    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 1 Response Dec 12, 2013

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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 5 hrs ago

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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

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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

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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

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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

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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 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 61-65, F 5 Responses Mar 24

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    Related Experiences

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    I am writing this to show you that you can live with MS fairly comfortably if you are fortunate enough to find the right medication that works for you and have a good support...
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    Tonight I am sad. I am grieving. But I am grieving for someone who is still alive in a physical body, but who is not the same strong person I see in the photographs I've been...
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    I am 17 years old - 18 in November - and I have struggled with my weight and wanting to lose weight since I was 15 years old. I've been told many times that I do the things I do...
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    I was dx n 2009 with r.r.ms. I've done all kinds of therapies & changed my diet. I take daily vitamins 7 anti inflammatory suplements 2 help me. I did Copaxone 1 year.. shots sucks...
    sparradia sparradia 36-40, F 2 days ago

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    Cage Conditioning is usually a 30 minute higher depth interval coaching class, made by nine time earth MMA winner Matt Hughes. Incorporating conditioning drills that MMA fighters...
    Willy52yt Willy52yt 31-35, M 1 Response Sep 26

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    We now have developed the following guides for schools and native authorities on how to entry and make use of the S2S knowledge transfer service:If you buy S2S, utilize it during...
    Jacksonpj05 Jacksonpj05 31-35, M Sep 28

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    attached is a picture of my xray. i am worried i gave my daughter her primary complex. does this xray indicate TB?
    kumagski kumagski 26-30 Oct 1

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    attached is a picture of my xray. i am worried i gave my daughter her primary complex. does this xray indicate TB? 
    kumagski kumagski 26-30 1 Response Oct 1

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    My snapchat is primarysolution
    blackveilacolyte blackveilacolyte 22-25, M Oct 15

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    Her mother, past con artist turned highly conservative pseudo christian fruitcake, recently started beating my friend which resulted in her leaving to go live with her dad who is a...
    DataDiver DataDiver 16-17, F 2 days ago

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    My girlfriend, who is my primary caretaker, took our brand new son to another state to visit her grandparents. My parents are unable to care for me these days because shortly after...
    DisabledBoy DisabledBoy 18-21, M 1 Response Sep 28

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    Somewhere In Asia Is A Magyar(Hungarian)Guy Who Doesn't Know His True Heritage-Before I was born my dad tried to immigrate from Yugoslavia to America in the early 1990s.There he...
    MagyarinToronto MagyarinToronto 18-21, F Oct 11

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    I'm going to write out my entire life story. It's not very long, but if you're interested then do to ahead and read it. Born in a small town called Swindon, on the 8th of August...
    TheWonkyRook TheWonkyRook 16-17, M 5 Responses 6 days ago

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    I have just started college, I have been bullied for the past 6 years at primary school and high school, I have experienced terrible moments. My girlfriend left me during February...
    SidneyCoughlan SidneyCoughlan 16-17, M 2 Responses 5 days ago

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    I have IBS (Irritable Bowel Syndrome). I've always had a very sensitive digestive system, but it became really bad in 2010-2011. It was triggered because I had severe depression...
    spacepixie spacepixie 22-25, F 1 Response 15 hrs ago

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    Yes I'm still alive, if it wasn't for my bf (now ex) and sister and her bf Doug I would have killed myself last night. I am checking myself in to a mental institution today to see...
    Rosaalie Rosaalie 18-21, F 1 Response 6 hrs ago

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    Sometimes, chaos comes into life catching you by surprise....The equilibrium you worked so hard to maintain is tipped off-balance....The ball of the pendulum is swayed from one...
    samemay54 samemay54 41-45, F 1 Response 16 hrs ago

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    Everybody has been on both sides of bullying. The bully and the victim, everybody, except maybe Gandhi. Throughout my career as a student in middle and high school, what I have...
    francake16 francake16 16-17, F 1 Response 14 hrs ago

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    Nudity isn't necessarily erotic; Children prove this to us everyday. In American society, however, we have been taught to believe that if someone is nude, we have to think of them...
    Ginkofishin Ginkofishin 18-21, F 5 Responses 14 hrs ago

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    Happy Friday...I would have been happier if I had a result. I'm just going to sit here and have a little cry. I'm too tired to be able to resist.
    cheekyhannah cheekyhannah 31-35, F 1 Response 14 hrs ago

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    When I look back into my childhood, I could say that I was a happy-go-lucky child. I was one of those kids who played outside in clutters, with bikes, toys, and imagination. I didn...
    JumpingTomatoes JumpingTomatoes 16-17 13 hrs ago

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    i have a crush who works on another location but we have the same company. lets call her vina. shes the kind of girl who almost got my ideal one. shes simple, smart, caring, sweet...
    KeeyCharming KeeyCharming 22-25, F 13 hrs ago

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    I understand she is my mother and I am supposed to respect her yet I can't respect anyone who treats me the way she does. If we have a disagreement and we try to talk it out she...
    Saphic33 Saphic33 26-30, F 1 Response 13 hrs ago

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    I will have to wait for the positive people's story endings. One can't change their life until one wants to. Maybe, the love I have is only in my imagination? There were days of...
    redribbonbook redribbonbook 46-50 12 hrs ago

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    We have a major terrorist threat building, we have a pretty open border on the south end and extremist who know how to use it. The US, contrary to what some people try to teach is...
    lasergraph lasergraph 61-65, M 7 Responses 11 hrs ago

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    melikebacon melikebacon 22-25, M 10 hrs ago

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    I used to be bulimic. It all started becasue of a guy I was dating. He thought I should lose a few pounds. I only weighed 125 pounds at the time. I thought I was in love so I...
    karidenley karidenley 18-21, F 1 Response 9 hrs ago

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    Within the last year, I have developed an overwhelming urge to experience another man. To date I have been with 3 different guys. I have had oral, given oral, and bottomed. I have...
    dad3on26 dad3on26 51-55, M 1 Response 9 hrs ago

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    Tis better to have loved and lost than to have never loved at all.
    Shirousa Shirousa 22-25, F 1 Response 8 hrs ago

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    Linguistically speaking, we all have an accent. Americans have an accent to Europeans. LOL. So every single person on EP should be able to relate to this post-- of they can speak...
    mermaidstrandedonland mermaidstrandedonland 18-21, F 1 Response 7 hrs ago