Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

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

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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, 2014

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 6 Responses Mar 15, 2010

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    ...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, 2014

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    How do you treat ms? I have not been diagnosed, but my grandma does and I am worried I might.
    Happybri123 Happybri123 18-21, F Mar 22

    Your Response

    Cancel
    I decided to write an update since my last entery was a long while ago. I am not taking any MS drugs. However I do take suppliments daily (NAC,B-12, Multi Vitamin, etc.) As well as...
    Shyness03 Shyness03 16-17, F Apr 1

    Your Response

    Cancel
    I do not know if I have MS. My mother had it and passed away in 2008 from complications related to the illness. I've been having strange symptoms and curious to hear others...
    dynamic71 dynamic71 41-45, M 6 Responses Apr 11

    Your Response

    Cancel
    I guess it's an issue that stems from childhood, and has sort of followed me ever since. I was bullied in primary school. Looking back on it now, it probably wasn't as viscous as...
    DropsofJupiter1 DropsofJupiter1 18-21, F 11 Responses Mar 22

    Your Response

    Cancel
    This is going to be quite long so beware. He was my Art teacher, let's call him Sensei as he is half-Japanese and I don't feel like revealing his name. But he teaches me Art back...
    AtashinoSunflower AtashinoSunflower 13-15, F 1 Response Mar 22

    Your Response

    Cancel
    Well, when i was in primary school one day evening after returned from the games I thought of taking bath outside of home. I think i was in 2nd or 3rd grade that time. After a few...
    dexster86 dexster86 31-35, M 2 Responses Apr 5

    Your Response

    Cancel
    First, I would like to start by saying that the reason I am posting this is to possibly offer some help to others. I give all the glory to God, because there have been many times...
    lynnparker12 lynnparker12 46-50, F Apr 8

    Your Response

    Cancel
    I'm Olivia and I'm home educated. I have been since I was 11 and left primary school. All the friends I had never talked to me again and I have been alone ever since. My mum and...
    deleted deleted 26-30 3 Responses Apr 12

    Your Response

    Cancel
    So my wife and I have been married for 2 years in june, and lived together for a total of 8 years. We have a 3 year old son and just purchased our first home. Things are great to...
    wheelman82 wheelman82 31-35, M 1 Response 4 days ago

    Your Response

    Cancel
    **Note: due to character limitations, the full version of this story can only be viewed on the EP website.** Anyone who has read my stories here on EP, knows that I speak...
    Loverofpeace Loverofpeace 41-45, F 9 Responses 18 hrs ago

    Your Response

    Cancel
    I do not have PTSD at all, but I just wanted to express my admiration and respect for people who do have to suffer with it. I have friends who have experienced PTSD - not from...
    DespicableMind DespicableMind 18-21, F 2 Responses 15 hrs ago

    Your Response

    Cancel
    I have social anxiety but it gets better every now and then. I haven't had it as bad as I do now in a long time. I think last time I had it was some time in 6th-7th grade. I'm in...
    ICanDoMyOwnThing ICanDoMyOwnThing 13-15, F 14 hrs ago

    Your Response

    Cancel
    I admit that I have social anxiety. It has held me back in my life. I would like to overcome my social anxieties. I know that with steady effort and willpower, I can and I will...
    chaekowski chaekowski 26-30, M 14 hrs ago

    Your Response

    Cancel
    Big House,Big Family My partner built our house in Australia.It was when my first two kids were born,when I was 22.We always knew we'd have kids-but never 6 of them! It is a...
    steinermum steinermum 31-35, F 8 hrs ago

    Your Response

    Cancel
    I've wanted to have children for about five years now. I was 13 when I first thought if getting pregnant. I can easily provide a baby with that love and support and care, but I'm...
    wishingforrecovery wishingforrecovery 16-17, F 4 hrs ago

    Your Response

    Cancel
    DON'T HAVE TIME for people who ask me stupid questions like "Are you Chinese?" "Are you American?" Clearly, if you don't give two damn about it, then you wouldn't be asking. And...
    IloveAutumn115 IloveAutumn115 22-25, F 3 hrs ago

    Your Response

    Cancel
    I am the middle child of 10 siblings and all of my friends are either pregnant or have a baby & I really cannot wait to have a baby. it's not that im still searching for the right...
    memberxxx memberxxx 18-21, F 1 Response 10 hrs ago

    Your Response

    Cancel
    I drive a truck and every two years I have to have a physical done. They've always been male doctors before, but this last one was done in a minute clinic at a pharmacy by a young...
    cherydaddy cherydaddy 41-45, M 4 Responses 9 hrs ago

    Your Response

    Cancel
    I am twenty something girl. I am only child and since my father worked abroad during his life , I grew up only with my mother. My childhood was pretty lonely because my father was...
    eeeeiisstt88 eeeeiisstt88 26-30, F 8 hrs ago

    Your Response

    Cancel
    hello good morning im so struggling im so fricken depressed it isnt funny i just cant take it any more i dont wan to live like this my mood is so loww i feel likea kid that cant...
    hannahabbie hannahabbie 46-50, F 1 Response 8 hrs ago

    Your Response

    Cancel
    I have a secret. I have had sex with my younger brother, and yes we have done it more then 5 times. Is it wrong that we are doing this?! Like yes I love my boyfriend soooo much and...
    LaurenIsASharer LaurenIsASharer 18-21, F 10 Responses 4 hrs ago

    Your Response

    Cancel
    I don't know why, but recently I want a baby so very bad. Unfortunately, it isn't a good time for my hubby and I. We are both at a bad place mentally and we need to stabilize our...
    BrokenWander BrokenWander 22-25, F 4 hrs ago

    Your Response

    Cancel
    Was married for 8 years in the 8 years I did not know who I married ...living with a man who a used drugs for you entire marriage....I did know or feel what a true marriage...
    supervisor15 supervisor15 36-40, F 4 hrs ago

    Your Response

    Cancel
    I've been diagnosed since I was 9. It's kind of a long story, because I'm still suffering today, but I can try to condense it. I started restricting when I was 7, and for about a...
    maebaldoza maebaldoza 16-17, F 1 Response 4 hrs ago

    Your Response

    Cancel
    i have 4 beatiful daughters, 16, 12, 9 and 6 years old, after 6 years we decided to have another baby, but this time we longed for the boy, we made all posible things to have a...
    fahterof fahterof 36-40, M 1 hr ago

    Your Response

    Cancel
    A friends father: Ok, well here is the long version--sorry it's a long read. I have a 28 year old daughter who has recently been working herself into the ground, and it caught...
    faintking faintking 31-35, M 59 mins ago

    Your Response

    Cancel