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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 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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    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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    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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    ...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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    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 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

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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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    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 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

    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

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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 4 Responses Mar 15, 2010

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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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    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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    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

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    Related Experiences

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    Lovelife090994 Lovelife090994 18-21, M 2 hrs ago

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    My mom has MS. This year my school is doing something to raise money for the National MS Society:) I am very determined to help, not only to raise money, but to educate people who...
    cra2yk1d cra2yk1d 13-15, F 1 Response Nov 8

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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 2 Responses Oct 29

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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 Oct 29

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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 Oct 31

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    I'm so broken up. My dad has had Multiple Sclerosis for over 10 years, but this last year has been worse than the previous 1 combined. He's my rock and my strength. I admire him...
    tamstar417 tamstar417 26-30, F 5 days ago

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    I studied dreams in psychology all the way back at school so this is 6 years ago! Here are some psychological theories about dreams having meanings. I’m going to start with the...
    MilweePetite MilweePetite 18-21, F 1 Response 13 hrs ago

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    I had my first attack when I was 11 years old. My second when I was 16. It was misdiagnosed when I was 11 as MRI's did not yet exist. Ill be 39 next week and have not had an attack...
    Jayded111 Jayded111 36-40, M 2 Responses Nov 6

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    My mom has had MS since I was a child and now I am almost 25. Her MS seems to be getting really bad and it makes me sad. She constantly falls and drops things. She fell today...
    Dragonslayer7 Dragonslayer7 22-25, F 2 Responses Nov 10

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    I was so happy when this apartment became available to me since I so wanted to move away from my verbally abusive ex-boyfriend who lived in the same building where I lived and was...
    heartprotection heartprotection 41-45, F 1 Response Nov 13

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    We found a blog.... no more of a letter in a blog it made us remember what it was like to be young an confused. From age 11 to 13 the segment known as Diana was our primary social...
    4in1 4in1 36-40 Nov 3

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    Automatically deleted? By EP moderators? What was that all about? Is it me, or is their (you all know who I am talking about) self righteous (mind you, highly hypocritical...
    Ferric67 Ferric67 36-40, M 2 Responses Nov 10

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    I recently started suffering from Coital Cephalgia, or Primary Benign Headache with Sex. It is quite possibly the most amazingly irritating thing I've endured. During sex, right...
    Beastweaver Beastweaver 41-45, M Nov 11

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    Primary School: "It's a rebellious phase, don't worry" High School: "It's hormones rampaging, don't worry" Rest of life: "Well if you aren't getting any better after 14...
    rorenchan rorenchan 18-21, F 3 Responses 4 days ago

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    I have been this way since I was 12 Yrs old, due to my parents divorcing and me having to live in 2 other towns at different times. I became suicidal at age 15 and that lasted up...
    psychologicallydamaged psychologicallydamaged 41-45, F 1 day ago

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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 2 Responses Oct 27

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    Marriage There are two kinds of things in life, basically: logical, and emotional. Emotionally driven things tend to turn out badly, for me anyway. I’ve been in love 7 or more...
    Regrets472 Regrets472 26-30, F Nov 11

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    Marriage There are two kinds of things in life, basically: logical, and emotional. Emotionally driven things tend to turn out badly, for me anyway. I’ve been in love 7 or more...
    Regrets472 Regrets472 26-30, F Nov 11

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    "Hmm...let me see...I'll take one of those, and one of those and, oh, I'll have 2 of them at least...(them being a blonde, brunette and 2 redheads...'just won't let them know...
    stiltcourt stiltcourt 36-40, F 2 Responses 1 hr ago

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    Interracial relationships rock! My two strongest crushes have been on the gorgeous results of an interracial relationship! :P
    Starrkya Starrkya 18-21, F 2 hrs ago

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    You can't hear your own accent! So how do we really know we have one?
    MrTibbles2014 MrTibbles2014 26-30, M 5 Responses 1 hr ago

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    It is just so unfair, but I know that the hereafter has better in store. I cannot help but cry and hurt so much. I feel so suicidal. I really have been through so much. From birth...
    SadAbdul SadAbdul 26-30, M 1 hr ago

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    Just feel like today will not be great... I don't have the energy for it.
    AaliyahLove AaliyahLove 18-21, F 1 hr ago

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    She is a moaning *****. But she does have great jugs.
    dirtyteenguy dirtyteenguy 18-21, M 58 mins ago

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    Your worst enemy is your own mind. My mind likes to have my good side fight the bad constantly. Kinda like the angel and devil on my shoulder but they are in my head.
    whoscarlo5 whoscarlo5 18-21, M 1 Response 49 mins ago

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    I just turned 30. Ive spent the last few years ruining my life on gambling. I make good money,yet have no money. I have built a huge debt, have beyond bad credit, and not sure how...
    ebrown84 ebrown84 26-30, M Oct 23

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    I usually have a pretty good memory but for the past month or so it's been so challenging for me to remember where I left my keys, glasses etc or even remembering my friends names...
    Angrysalads Angrysalads 18-21, F 1 Response Oct 23

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    I just woke up in the middle of the night and can't sleep!!! I have to be at work early in the morning....... Why am I up!!!??? LOL!
    Vladtheimpaler69 Vladtheimpaler69 41-45, M 3 Responses Oct 23

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    There are 500 people on this site who have GAD! Most GADDERS seem to be loners. But if you'd like to join me in forming a community for GAD folks, consider joining this private...
    worldbeat99 worldbeat99 56-60, M Oct 23

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    There two things that I want to do in life before I die. 1. Do the full marathon for once 2. Pilot the plane... I want to feel my first solo flight. smile... all of this is...
    SwanLake78 SwanLake78 36-40, F 4 Responses Oct 23

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