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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

    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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    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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    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 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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    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 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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    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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    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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    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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    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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    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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    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 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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    Related Experiences

    Worried about taking medication UrDA and there's no effect on the fatigue. Anyone have any good suggestions for dealing with it? Diet changes? Complimentary medicine? Thanks!
    wonderwoman100 wonderwoman100 41-45, F Jun 30

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    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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    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 10 hrs ago

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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 4 days ago

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    Remember when EP first started and it was about MS? Then, they decided to spread the love and make it about experiences... about anything. It's a wonderful idea, but there are...
    DarkwingGoslyn DarkwingGoslyn 31-35 1 Response Jun 27

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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 6 days ago

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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 6 days ago

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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 6 days ago

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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 4 days ago

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    6 years ago when I was 10 my father died.... my brother didn't know how to deal with it properly he had just finished primary school and was moving onto high school, when he...
    ajafueko ajafueko 16-17, F 1 Response Jun 27

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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 1 Response 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 3 days ago

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    Not a lot of people seem to have heard about BDD. I've even had a few psychiatrists and therapists who had not heard of it. To quickly explain it before I really talk about how it...
    SailingwithSparrows SailingwithSparrows 22-25, F 1 Response 8 hrs ago

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    September 2010: Sometime this month, without knowledge, I conceived my second child. I was living in Dodge City, KS with my ex fiancé and his son. We were constantly fighting and...
    Krissysheart Krissysheart 22-25, F 2 Responses 16 hrs ago

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    I am Lisa new here. I don't know how to describe myself. I am a sentimental but optimistic girl. I feel so lone and helpless when I was told that I had affected with herpes.I have...
    herpesltr herpesltr 31-35 1 Response 16 hrs ago

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    Welp so it looks like I'm the first post here. *takes a deep breath* okay, so my mom who is now 37 years old is a drug addict, more specifically meth, speed, heroine and whatever...
    Cryingsmile Cryingsmile 16-17, T 2 Responses 15 hrs ago

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    It all started when I got really bad pains in my joints every day it was a new pain somewhere else. To be honest everyone thought I was crazy I knew something was wrong. So a few...
    HannahdawnK HannahdawnK 18-21, F 1 Response 14 hrs ago

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    I don't quite know where to begin. I am feeling that there is absolutely no point in being so close to anybody anymore. It just hurts too much when they are gone. I have lost...
    SteelPearl SteelPearl 46-50, F 1 Response 13 hrs ago

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    After 21 years of marriage, my wife wanted me to take another woman out to dinner and a movie. She said, “I love you, but I know this other woman loves you and would love to...
    sapphire601 sapphire601 31-35, F 12 hrs ago

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    Me too., i have terrible memories of school .. I feel i missed a lot of my education dealing with bullies n meanies that i couldnt comcentrate on my studied. I was made to feel...
    Janeysunshine Janeysunshine 36-40, F 2 Responses 9 hrs ago

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    I don't enjoy the career path I chose. I'm not that good at it either. I'm 32 and have no clue what to do with myself. 3 years ago I started college. My plan was to get an...
    Roxvox Roxvox 31-35, F 2 Responses 6 hrs ago

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    I havent been diagnosed yet but Im pretty sure I have it. Doctors say I have disorder. It sucks. I started feeling this way almost at the end of my first year in college. I had a...
    flight12 flight12 18-21, M 3 Responses 5 hrs ago

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    Well my boyfriend does! He falls asleep most nights we are together on the couch and I come and 'collect' him when I wake up at crazy o'clock and he isn't there. I have asked him...
    Starz3060 Starz3060 26-30, F 2 Responses 3 hrs ago

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    I think I've been told a few times even though I personally don't like my voice since my voice is a little deep and I have been called, "Sir" and "Bro" over the phone a few times...
    texaschic35 texaschic35 31-35, F 2 hrs ago

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    I have worked hard in school for my entire life. I have never gotten anything below straight A's and take all honor classes available. I have never done anything bad such as...
    brokeninsidesmilingoutside brokeninsidesmilingoutside 13-15, F 2 hrs ago

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    For guys. I just saw that spreadsheet a guy made for all the "excuses" a guy's wife had for not having sex. And it made me think of stuff like how my friend's boyfriend wanted them...
    PinkMellow PinkMellow 18-21, F 1 Response 1 hr ago

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    How To Stop Loving Someone Who Does Not Love You. 1. When he starts distancing himself from you, do not restring bridges with your own sinew. You will find yourself two months...
    butterfliesndut butterfliesndut 18-21, F 26 mins ago

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    It is a friend with benefits rather than multiple like the title suggests. I have never done it before. Probably wouldn't do it again. But now I feel trapped and I think he does...
    starflower1 starflower1 26-30, F 2 Responses 16 hrs ago

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