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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. 36 People

    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 2 Responses Aug 4, 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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    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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    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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    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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    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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    ...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 2 Responses Sep 19, 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 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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    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 6 Responses Mar 24, 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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    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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    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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    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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    Related Experiences

    I have experienced it twice. The second time was no less terrifying to the first. It felt as if something was holding me down and when I tried to call out for help I had no voice...
    mindfulmermaid mindfulmermaid 41-45, F 15 mins ago

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    So hard to start a relationship with someone with me having MS. Each year I have been going downhill Has anyone heard of a uphill?
    Agilezs Agilezs 61-65, F 35 mins ago

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    I have posted in this thread a few times in the past. It has been 9 months since my last post. I am pleased and proud to say that my relationship is the strongest it has ever been...
    sfm21 sfm21 22-25, F 1 hr ago

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    Im having a breakthrough guys. I have had severe HS for 12 years and its been an absolute living hell. My underarms are scarred and have different skin tones and I have always felt...
    bel1196 bel1196 18-21, F 1 hr ago

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    this absolutely sucks I've joined just for this reason and i feel like i will never be able to have a serious relationship with this who wants to have sex with someone with these...
    kaitiegirlsms kaitiegirlsms 13-15, F 1 Response 1 hr ago

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    I like being sad. I like being cold and wet. I like feeling that way when I know I will be warm and dry. I like being cold and hungry and looking into the window on Thanksgiving...
    rick4545 rick4545 36-40, M 2 hrs ago

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    Didn't know the extent of how bad until I did some research online. My thing was dustmites and mold. Holy effing sh--- part and partial was the fact I didn't know that you need to...
    Lov3intheasylum Lov3intheasylum 31-35, F 2 hrs ago

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    It's really funny when someone insults me by calling me a druggie. Like I know I'm a f****** druggie how the f*** are you gonna call someone what they are as an insult? That would...
    GiveMeHead69 GiveMeHead69 22-25, F 1 Response 2 hrs ago

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    You left and took everything, you took the three things I cared most in this world for, You and our two dogs that we had together for 8years, what am I suppose to do when all I...
    koorie123 koorie123 22-25, M 2 Responses 3 hrs ago

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    I have been blocked by various people do I care not really ..... But if they want to upto them but it does save a lot of time When people add me to there buddies they say...
    ilovebustyfemales ilovebustyfemales 41-45, M 3 hrs ago

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    At first glance , you'd never assume I was sick. Too young, too pretty, too normal ... 20 years young, hetero white woman, smart, vivacious.... I've yet to find any body else with...
    skippandyouube1 skippandyouube1 18-21, F 3 hrs ago

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    I want nothing more than to have crazy large family with a loving wife. I want our house to be bursting at the seems with love and life from our ever expanding brood. I don't have...
    doof3 doof3 26-30 1 Response 3 hrs ago

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    It's mostly because I live in a country were social life is hard to get. I stay home all day. TV shows, Anime, Movies, Music, Video Games, Books. I feel that I am living other...
    NerdyMick NerdyMick 13-15, M 3 hrs ago

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    For the past few years, I have been on a quest to be happy. I was actually catapulted into this quest by a dear friend I met on here four years ago and still text daily. I...
    ANewCreation4Him ANewCreation4Him 36-40, F 3 hrs ago

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    I also have no friends because of my bpd. I want to be normal and I can't be.
    biwetgal94 biwetgal94 18-21, F 4 hrs ago

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    Me and my ex girlfriend both have bpd. I could only attach to her and understand her and I actually felt everything with her like my bpd wasn't there you know? She couldn't give...
    biwetgal94 biwetgal94 18-21, F 4 hrs ago

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    It says so on my medical records. I get incontinence pads from the NHS continence service. My incontinence and enuresis is caused by my diabetes and is not curable so I will have...
    Stillwetshisbed Stillwetshisbed 46-50, M 1 Response 4 hrs ago

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    I had a talk this morning with my husband and his words to me was I didn't have the affair I know what it looks like but I didn't have the affair. you are gonna be the reason we...
    unhappywife16 unhappywife16 41-45, F 1 Response 4 hrs ago

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    Her name is Nichole, but she's been Nix to me for as long as I can remember. It's hard to describe to anyone else how close we are, how well we mesh together... But it's like...
    Songsinshadow Songsinshadow 18-21, M 2 Responses 4 hrs ago

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    And, not that long ago I was known to have howled at the moon.
    Thisis4fun Thisis4fun 56-60, M 2 Responses 5 hrs ago

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    I have a southern accent because I live in Michigan how does that work
    fiberjackto45 fiberjackto45 16-17, M 2 Responses 5 hrs ago

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    I had an epiphany today. Already. 7:30 in the mornin! I hadn't wanted to move on before (past few months) because it's scary. I didn't know what was ahead, what would happen in my...
    Lilcuppa Lilcuppa 70+, F 3 Responses 5 hrs ago

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    It's been a week and I'm still reading my husband's emails that comes from her. Will it ever stop? I see she's hurt. I don't feel satisfaction I just have this shaky feeling...
    poppingcandyrulez poppingcandyrulez 36-40, F 5 hrs ago

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    i just got into a college, i met this senior, he seems fine and kind of cute. we used to say "excuse me" or "sorry" whenever we passed by senior. this senior always smile and say...
    shalleo shalleo 16-17, F 5 hrs ago

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    Anyone on here ever go through that time in phy ed where they chose teams and you wondered if you were ever going to be picked. Looking back on it I should have refused to...
    tastyfrzz tastyfrzz 46-50 5 hrs ago

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