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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

    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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    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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    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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    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 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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    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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    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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    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 a week ago

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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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    ...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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I am 46 years old. I was married for 16 years. My boys are 15 and 17. I have primary custody. I have never missed my ex husband for one day. But I regret having broken our...
    Monicas2boys Monicas2boys 46-50, F Oct 6

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    The me I used to be died as pieces of old dreams, ideals and aspirations dissolved from a diagnosis and a handful of realizations. I want to be alive again. I refuse to give in. I...
    ceahope ceahope 36-40, F 15 hrs ago

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    As I approach my 6 year anniversary of being diagnosed with MS, I thought I would share last year's reflections: "This weekend is my 5 year anniversary of being diagnosed with...
    danc3rz danc3rz 31-35, F Oct 17

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    A mind that is not narrow but shallow, the power of being objective, innocent until proven guilty, self-esteem. All these are abilities a person has to develop in his life. Me, I...
    biancabirsan1994 biancabirsan1994 18-21, F 1 Response 2 days ago

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    A mind that is nor narrow nor shallow, the power of being objective, innocent until proven guilty, self-esteem. All these are abilities a person has to develop in his life. Me, I...
    biancabirsan1994 biancabirsan1994 18-21, F 1 Response 2 days ago

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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...
    WildHydrangeas WildHydrangeas 26-30, F 4 Responses Oct 5

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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...
    kaylxlynn kaylxlynn 18-21, F 1 Response Oct 18

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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 Oct 21

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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 Oct 22

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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 4 Responses Oct 18

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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 Oct 19

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    I was in third grade when I was first diagnosed with ADHD. I had encephalitis (swelling of the brain) the summer before I started first grade and my sister had also been diagnosed...
    patricialeigh patricialeigh 31-35, M 4 days ago

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    My family drives me to the point of suicide. I know that suicide is selfish, and I'd never commit suicide. but they think I'm being manipulative, the moment I say how I feel, after...
    Luckycharm2014 Luckycharm2014 18-21, F 9 hrs ago

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    As you all know there was a man in my life who persecuted me and made my life a living hell . I wish if I was a talented author to write the whole story with all the details but...
    lostsouluk lostsouluk 31-35, F 3 hrs ago

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    I have no real people to turn to. The internet helps though. people on the web are the nicest I have ever met and they help me. talk to me, but its not enough. I want to be able to...
    ShhhAnon ShhhAnon 16-17, F 5 Responses 17 hrs ago

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    I have a hard time with emotions. I hole them up in me until I cant anymore and I freak out and have attacks. It sucks and it hurts. all the emotions come at me at once and I feel...
    ShhhAnon ShhhAnon 16-17, F 1 Response 17 hrs ago

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    I have five alters that I keep in check for the most part, one of them has been acting up lately because he represents my sexual side and my dad's girlfriend's son is hot, add that...
    idenmarshals idenmarshals 18-21, M 1 Response 16 hrs ago

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    So it's not really something i have... But this just annoyed the **** out of me. Soo i took the past like 35mins typing out my experience. Okay, i understand it was a mature topic...
    white701 white701 18-21, M 16 hrs ago

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    My professor pulled me aside after class and asked if I have a medical background (cuz it shows in my presentations). I said I don't have a professional background but I...
    Terrain12 Terrain12 31-35, F 11 hrs ago

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    Trust... When someone you trust hurts you they have no idea how you feel. How bad the hurt is by what they have done and how ultimately betrayed you feel. And let me tell you...
    Jenezebel Jenezebel 26-30, F 8 hrs ago

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    Why is it that... We know we like each other we're sweet.. But there's no commitment have you every heard of "MU"? It mean mutual understanding. That's when you'll be labeled when...
    RcZzz RcZzz 13-15, F 1 Response 8 hrs ago

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    Expectations. We all have them. Talking to mentor. He says dont expect nothing from people. Me says why not expect truth and decency. Him says they will disappoint...
    Livyn4pals Livyn4pals 46-50, M 8 hrs ago

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    I never felt anxious or panicky about things as a rule until 7/7 (the bombing on the 'tube' / underground trains in London). I have been in London got 22 years and was totally fine...
    splashUK2014 splashUK2014 41-45, M 7 hrs ago

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    I have Anxiety disorder specifically Agoraphobia and have Panic Attacks. I take medication to help it stabilize and deep breathe when I need to.
    roselani2005 roselani2005 26-30, F 1 Response 6 hrs ago

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    I have a few in another state, but they are always busy, so they never have time to talk to me. When they do talk to me, I get the vibe that they could care less if I never spoke...
    anonymouslymysterious anonymouslymysterious 16-17, F 1 Response 6 hrs ago

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    Deleted Experiences I know there used to be shared experiences in this category, because I wrote them. Orient Beach is a beautiful nude beach on the small island of St Maarten...
    2censored 2censored 46-50, M 6 hrs ago

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    Now my sons are going through it...and I don't know how to help them.... My ex husband threatens suicide on a regular basis ...(and yes, he does have professional help, who he can...
    chancemeeting chancemeeting 46-50, F 6 hrs ago

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    I'm so annoyed at my sister! I told her I was upset about work and problems and her reply was "at least you got a job, (now this girl don't even have a job) & hasn't looked...
    pokaprincess pokaprincess 18-21, F 3 Responses 5 hrs ago