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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

    ...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

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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, 2014

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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 5 Responses Mar 15, 2010

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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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    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 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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    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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    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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    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

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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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    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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    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

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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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    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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    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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    Related Experiences

    It was 2013 and I was 26 years old when I was diagnosed. I am now 28. It started out with numbness in my extremities and went to cordination difficulties and weakness ending up in...
    JennaMB86 JennaMB86 26-30, F 3 Responses Jan 29

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    I'm hoping my situation might help some others with MP! I have suffered from Meralgia Parasethica for many years. The cause of my MP has always been a mystery - until now. A few...
    MPSufferer MPSufferer 61-65, F Jan 28

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    I am a 47 year old male. I was dx with MS in 2013. I am and was the bread winner of my family of 4. In the last 2 years my MS has gotten worse my gait is terrible and my cognitive...
    ceisinger ceisinger 46-50, M 1 Response Feb 2

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    I’m 26 years old and I was diagnosed with MS about a year and a half ago. I’m very asymptomatic, this means my symptoms may go unnoticed. Weakness in my legs and arms, and lack...
    isa88 isa88 26-30, F 1 Response Feb 3

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    I was diagnosed in 2007. I was a long distance runner before my diagnosis and kept it up for years but now I can barely walk and am afraid I will have to go on disability soon...
    robbyt3545 robbyt3545 31-35, M 1 Response Feb 4

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    So does anyone here have other "issues" besides MS. I have: Migraines Idiopathic thrombocytopenic purpura Diabetes
    DaveShaved DaveShaved 46-50, M Feb 8

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    dx 2003 disability retirement 2009. wife left 2013 alone, and wish I would just die, ******* ms is Aweful.... I'd rather have cancer, go thru hell, with the chance to beat it or...
    jr5646 jr5646 41-45, M 1 Response 5 days ago

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    Hi, my names Jen and I have a younger brother with autism. I'm 16 and he is 6 almost 7. Everyone loves him which comforts me a lot but the thing is, he is different from other kids...
    Jjeenn6049 Jjeenn6049 13-15, F 1 Response Jan 29

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    It all really started when I was ten years old. Growing up, I had a my mom, my dad (who was pretty abusive) and my younger brother. I was in fourth grade at the time. I remember...
    joshsmommy082082 joshsmommy082082 31-35, F 1 Response Jan 30

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    I hate my sister. It's a bad thing to say but I hope she dies (I would never admit that in real life to people). She was the reason I missed out on spending time with my parents...
    NatashaRose NatashaRose 18-21, F 4 Responses Feb 13

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    sigh........................................................!!!!!!!!!!!!! it is really very hard for me to talk about that , but i would like to do , when i was a child i missed...
    umayyad umayyad 31-35, M 2 Responses Feb 13

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    it´s the story of my emotionally Disfunctional family Rich family, 500m2 house in wealthy suburbs area in Europe. father that does a stunnig Imperssion on Everyone. charming...
    majkel87 majkel87 26-30, M 1 Response Feb 15

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    Many individuals have lower back pain so often which it starts to become daily struggle. You don't have to tolerate pain daily. Usually do not expect everything to be fixed after...
    licapeng87 licapeng87 22-25, F Feb 17

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    I'll try to sum up and simplify this as I could write for days, and to the untrained seem crazy if making any sense at all. I was bullied and mentally abused from childhood, as...
    NightGambit NightGambit 31-35, M 9 Responses 6 days ago

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    I Have Had Pectus Carinatum since I Was Born AND I was always made fun of my entire life I couldn't take my shirt off at the swimming pool I couldn't do anything at the gym when I...
    TnHollywood TnHollywood 31-35, M 2 Responses 13 hrs ago

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    Majority of the world are still trying to find themselves. Everywhere you go you see people who have lived many years before you, struggle as you do. Even people with a decent job...
    WarzJack WarzJack 22-25, M 13 hrs ago

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    I like to have a nice boyfriend. I work full time and am a single mother. I don't have any family around me and don't have many friends. It would be really fun to have a nice...
    marion13 marion13 36-40, F 23 mins ago

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    I have 3 brain tumors, I have hydrocephalus, (water on the brain) I almost died, I've had 7 surgeries in just this week, I haven't seen my family in 3 months(except my mom) and I'm...
    Musiclover0620 Musiclover0620 16-17 1 Response 22 hrs ago

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    Here's a thought about "where have all the stand up, admirable, powerful people who days long ago were the staples of the community. And I have come to see that they have abandoned...
    dzadaz dzadaz 26-30, M 20 hrs ago

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    Most people learn about personal boundaries during childhood. Parents and teachers show them through discipline, and example, what behaviour is tolerable and what is off-limits...
    talkinaftermidnight talkinaftermidnight 36-40, M 1 Response 20 hrs ago

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    I have the best looking eyes in my whole family. they are a semi dark brown with a warming feel to them. most girls i've dates have done so for my eyes . they said that it was...
    Sladetgx57 Sladetgx57 18-21, M 1 Response 19 hrs ago

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    When I retire or something, I I'd LOVE to have my own cafe. Well, actually I think it would be more of a bookstore, and, in the middle of the store, have a cafe area to chill and...
    tubularbook tubularbook 13-15, F 12 hrs ago

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    In 8th grade I saw. a video that was to help you control your depression. It said you have to give it a form and name it. I gave my depression a human form and named it Sebastian...
    Mewl Mewl 18-21, F 1 Response 10 hrs ago

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    i cant handle living like this one day i have walls up i feel so angry inside i dont wan to do anything im covered in poisoned i want the pain to come out i feel lost and ugly mabe...
    hannahabbie hannahabbie 46-50, F 9 hrs ago

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    This should ring serious alarm bells. I found out a month and a half ago that my husband had cheated on me and it all started with him playing an online game and messaging a woman...
    mskarma mskarma 41-45, F 2 Responses 9 hrs ago

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    I am currently on a detox programme and trying to fight a addiction to, Energy drinks and Cola drinks that have destroyed my quality of life. I started getting symptoms of...
    UKMALE31 UKMALE31 31-35, M 9 hrs ago

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    I have had anxiety/panic disorder for about 18 yrs.The last year ,i have been good,but for about a week now,it's been really bad.My hands shake i get dizzy,my stomach is sick.I...
    1prettygirl 1prettygirl 36-40, F 9 hrs ago

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    I have had Rosacea since I was 19. I have been to a dermatologist once. I am 31 now and my Rosacea is ten times worse than before. My nose and face are always swollen, skin greasy...
    Mulhollandrive Mulhollandrive 26-30, F 8 hrs ago

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    I don't have the hyper part at all, I just have attention problems. The hardest part is that I have such little control over it because I will be trying to get something important...
    zen001 zen001 22-25, M 7 hrs ago

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    Where do I even start. Just heads up, this is long. Lets start with knowing me a bit. I am a muslim girl who have sinned by dating males online and offline for many years. I have...
    EvelynElf EvelynElf 16-17, F 1 Response 7 hrs ago

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