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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. 31 People

    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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    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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    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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    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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    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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    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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    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 Oct 16, 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

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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 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 2 Responses Mar 24

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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 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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    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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    Related Experiences

    I had a liver transplant in 2003 for PSC. In 2013, PSC came back in a rage. I had bile duct surgery in June of 2013, now liver numbers are down, but liver biopsy shows liver is...
    tzeiher tzeiher 61-65, M Jul 15

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    Good morning everyone, I am new here and I was reading a bit about some of you and your experience's. I must say you are all very supportive and I am happy to say that I am pleased...
    j5myers j5myers 26-30, F 1 Response Jul 19

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    It's very difficult having a condition where you look fine on the outside but feel bad. People look at you and think " well she looks fine, what's her problem?" MS is definitely...
    andimann andimann 41-45, F Jul 1

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    So I have my first neurology appointment today. I’m going to see the neurologist who treats my mother and has treated my brother. I don’t expect to have the MRI today, but I...
    K3022 K3022 31-35, F 6 Responses Jul 3

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    I had a sudden urge to post my experience of MS with anyone who would read. I have only been on this journey since January, but boy has it been a long one. I am only 20 years old...
    youngwildfreedom youngwildfreedom 18-21, F 3 Responses Jul 6

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    I also as of today have a 4 month old son. 😀❤️My neurologist wants me back on the meds, but I can't breastfeed if I do. My Doc says the first 6 months are the best nutrients...
    PandorasDream PandorasDream 36-40, F 1 Response Jul 14

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    The Human Chain I entered the Neuro Dept, checked in, then do what I always do- go to then restroom. On my way back to the waiting room I passed a lady in a wheelchair kind of...
    mrsbuzzkill mrsbuzzkill 51-55 Jul 18

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    I don't know what is going on. Well, I know what could be... January 1, 2011... I went completely blind out of my left eye, like a light bulb going out. I was already legally blind...
    DarkwingGoslyn DarkwingGoslyn 31-35 3 Responses Jul 18

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    So, you know how most people use the weather as a subject for small talk? Well my grandfather uses it as his primary topic of conversation. He just wants to tell everybody when it...
    purposebuilt purposebuilt 22-25, M 3 Responses Jul 17

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    I like this guy, we use to go to school together last year in year 7 at our old primary school. Now we go to different high schools, but we still see each other at an after hours...
    Itsmariaax3 Itsmariaax3 13-15, F 1 Response Jul 19

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    I was poor and cast out of the cool kids at primary school XD I loved sports, i was skinny and brash and i looked nothing like a girl, i wore the cheapest clothes and they where...
    Yellowfosho Yellowfosho 18-21, F 1 Response 6 days ago

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    I have never heard of it but apparently its an obsessive disorder and people with borderline personality and anxiety disorder have it. I don't know how i am going to stop because i...
    Gentleandlovingsoul Gentleandlovingsoul 36-40, F Jul 1

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    but my primary problem is that I'm socially apathetic; I can function normally on a daily basis without dread, I can start conversations, and I have the ability to make friends...
    Philonous Philonous 18-21, M 1 Response Jul 11

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    I developed a bartholin cyst the size of a marble. After seeing my primary care doctor; she put me on an antibiotic called Bactrim 800/160 taking two pills a day for 10 days...
    misslace86 misslace86 26-30, F 2 Responses Jul 11

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    I feel kind of boxed in about this because he is like a childhood friend. We only ever talked here and there and sometimes my brother and I went over to his house and I would hang...
    Tabithaaa Tabithaaa 16-17, F Jul 12

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    My symptoms started when I was 16. I began to experience widespread joint, muscle pain, and headaches. I was seen by multiple doctors who said that I was perfectly fine and just...
    eeeck eeeck 26-30 Jul 21

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    I've made several posts with this heading, and I'm aware that this might make it hard to follow if looking at multiple posts. However, this is my current focus and all of these...
    DanicaER DanicaER 36-40, F 1 Response 6 days ago

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    My family has way too high expectations of me... I have to be the perfect kid, I have to make amazing grades I have to be skinny and fit and athletic, social and nice to everyone...
    Tayway22 Tayway22 13-15, F 2 Responses 2 hrs ago

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    Everyone that has shared a similar experience all have one thing in common, we all say 'but I love him'. I hear your stories and can relate deeply to them. There would be nothing...
    Smiles4u2014 Smiles4u2014 41-45, F 1 hr ago

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    when your parents notice cuts i moved to my fist. i beat myself till tears ran forth like the river of sorrow in my heart. the bruises you cover. start wearing a shirt to bed so...
    saint0928 saint0928 18-21, M 59 mins ago

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    good night, too much is going on I need some sleep. I have to wake up early anyway.
    annieannana annieannana 18-21, F 1 Response 2 hrs ago

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    Family Tree Time Grandmother-Sorta Rich lady that disowned me and my mom -----------------------kids-------------------------- Bubba-Aunt that my mom has a bad relationship...
    KatIsAMermaid KatIsAMermaid 13-15, F 1 hr ago

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    Experiences with grammar and spelling issues. Also the ones with capitalized articles, prepositions, etc. I have no choice but to use them because they're already established...
    metaphornographic metaphornographic 18-21, F 1 hr ago

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    It is so frustrating to have anxiety. Along with all my other health issues, anxiety and depression are much more debilitating. I would never wish anxiety upon anyone. The question...
    cassidybute cassidybute 18-21, F 5 Responses Jul 1

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    I have been improving my belief in my self More lately it's wonderful
    rosiebloom rosiebloom 22-25, F 1 Response Jul 1

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    This is by far one of the funniest things I have ever seen !
    LovelyLadyJ LovelyLadyJ 22-25, F 6 Responses Jul 1

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    You have to do some thing different to get some thing different
    rosiebloom rosiebloom 22-25, F 1 Response Jul 1

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    Her name is Darlene and she is a piece of crap. He heat doesn't work in the winter. Her windshield is extremely cracked. Her tires squeak. Her driver side door doesn't open from...
    sunflowerpet sunflowerpet 18-21, F 2 Responses Jul 1

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    I am not your average skinny white girl. I am a thicker girl and I am trying to love the way I look. I don't have the skinny waist and the tiny thighs, but the world wasn't meant...
    ericaaa987 ericaaa987 13-15, F 1 Response Jul 1

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    I was totally in love with this one guy thinking we would last forever. He was very religious and turns out I guess god told him to stop. So then our relationship ended and he...
    Sparklefuck Sparklefuck 13-15, F Jul 1

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    To anyone with any questions about POTS or wanting some enlightenment or to have a laugh check out my blog at www.potsisthepits.com
    cassidybute cassidybute 18-21, F 2 Responses Jul 1

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    There comes a point in every relationship where we know we need to walk away. Even when every instinct in us is screaming to hang on for just a little bit longer, we don't have it...
    diablesse34 diablesse34 46-50, F 21 Responses Jul 1

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    I was at a swimming pool, sitting near the edge, and a man had his leg caught up with a huge metal plug and kept being dragged beneath the surface. I was clinging to him with all...
    AngelofPink AngelofPink 18-21, F 2 Responses Jul 1

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    Never have, never will. If she isn't sure who she wants, then I don't want her.
    reelman4372 reelman4372 31-35, M 1 Response Jul 1

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    When I was in my twenties and was in a monastery actually studying to become a Franciscan brother. One week end we were having a retreat and during the singing of a song which...
    mike52ad mike52ad 56-60, M Jul 1

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