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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

    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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    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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    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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    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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    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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    ...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 1 Response Sep 19, 2014

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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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    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 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 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

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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 6 Responses Mar 15, 2010

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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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    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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    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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    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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    Related Experiences

    This doctor cured herself of MS and went from a wheelchair to finishing an 18 mile bike marathon. Her radical diet is just intense vegetables and more. See it here: http://www...
    gentlewarrior1 gentlewarrior1 66-70, M 3 days ago

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    Eight years ago I was thrown into parenthood. The cooking, cleaning, scolding, and the homework helping was all done by me. Eight years ago my mother was diagnosed with MS. It...
    zshley123 zshley123 18-21, F May 4

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    This happen when i was 12. It was in 2010. I was in a primary school near to my house.I was so scared to go to school. Because i knew i had to face the bullies. Everyday since then...
    Fear33 Fear33 16-17, F May 10

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    My mom has MS. She is my hero. Before she started showing symptoms, she was super - mom. She was the sole provider for us, and did all the housework and household finances. When...
    BCodewell BCodewell 26-30, F May 13

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    Death ?! The first border to cross for those who accept the reality of the human body - it's nice to over come the mental attachment to the world around you and say " I don't fear...
    Stephenrko Stephenrko 31-35, M Apr 25

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    I'll never know exactly what I did, but I'm constantly living with the pain of a bad back. It was Halloween. 2006. I woke up so excited that it was my favorite holiday. That is...
    SheepishlyMe SheepishlyMe 26-30 2 Responses Apr 30

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    I just got diagnosed with Meralgia Paresthetica yesterday and it was nothing but a shot through the heart. I was a healthy child for the most part, until I began reaching double...
    1nut3meg2 1nut3meg2 22-25, F Apr 30

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    My knife collection isn't much, but you got to start somewhere. I got a montana state multi tool pocket knife a year or two ago. It is very similar to what macgyver would use...
    stewartgreen stewartgreen 18-21, M May 3

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    Jakarta, Indonesia - Indonesia has the largest telecommunications and mobile services recorded in Asia. As the industry continues to grow, this 2015 forecast has started to...
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    I always wonder what would my life would have been like if I wasn't born in what seems to be my imagination. If people genuinely knew my existence and made a celebration out of it...
    deathnotefreak deathnotefreak 18-21, F 3 Responses May 4

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    Beginning a new site has never been easier as nearly every supplier that is hosting uses some kind of automation tool to put in your preferred Web Log platform. However, beginning...
    deepakrajput deepakrajput 22-25, M May 7

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    Because I can't do math and under-performed in my studies during my primary school, I'm always being called "Retarded", "The dumbest people on the planet", "Too dumb to tuition" by...
    8slowlyFading8 8slowlyFading8 18-21 2 Responses May 10

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    So, when I moved from primary to secondary school I began to be the platform on which bullies attack. I didn't suffer any physical attacks, however I was ridiculed and picked on...
    ftariq24 ftariq24 16-17, M May 14

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    I do not know where to start but I will try my best I'm 26 years old and I live with my mother and my sister (she's 23). I want to leave my country this year, i have to but what...
    Brainissue Brainissue 22-25, M May 14

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    Ok, y'all ready for another rant? Here we go in 3...2...1...NOW! I have a classmate named Sylvia. She is SO. FŬCKING. ANNOYING (there's gonna be a lot of letters with weird...
    BlueMetalChick BlueMetalChick 18-21, F 4 Responses 3 hrs ago

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    I was diagnosed with PCOS around a year ago and have struggled with my weight all my life. I'm currently 98kgs (216lbs). I've been on Weight Watchers for the last 9 weeks and have...
    ylime93 ylime93 18-21, F 1 Response 2 hrs ago

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    there have been paranormal activities in my house which every one has witnesses. one person might be overly superstitious and feel spirits around them but when each and every...
    marianova marianova 13-15, F 2 hrs ago

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    My name Douglas dashy from England, Oxford,UK ...HIV has been ongoing in my family for long..I lost both parents to HIV and it is so much pain have not been able to get over.As we...
    Kenned Kenned 18-21, M 1 hr ago

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    Every morning I fight my demons, I win every afternoon I see life around me and wish I had the one I want , I wish I could be half the man I really am but ADHD will never allow it...
    Ragidoll Ragidoll 41-45, M 3 hrs ago

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    Let's see... Klonopin, xanax, oxycodone, vicodin, percocet, hydrocodone, morphine, codeine, DMT, methamphetamine (once was enough for that. I have no idea how people get addicted...
    dontyouunderstand dontyouunderstand 18-21 2 hrs ago

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    The Runner returns...again... More than one month without seeing each other, yesterday he told me that he loves me too much that he doesn't want to make me suffer anymore. Het...
    Missberry73 Missberry73 41-45, F 5 hrs ago

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    He respects that I have "Free Bird" ways... :-) He knows I would never 'step out' on him, but... I do like to flirt...who doesn't?? Keeps you ALIVE right?? ;-)
    pixelita pixelita 41-45, F 4 Responses 5 hrs ago

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    My god I can't stand their hounding and their heckling. Every night I have to hear them back me into a corner about how I'll end up in hell. I feel like my brain is just constantly...
    PinkMellow PinkMellow 18-21, F 1 Response 4 hrs ago

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    So I got a call about a month or so ago from him. He was going to be in Sydney again and wanted to see me. So we decided to meet at a bar again and have some drinks. I was wet...
    Nelson1984 Nelson1984 26-30, M 1 Response 4 hrs ago

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    I haven't done "hard" drugs (heroin, crack etc.)...but drugs are drugs. I've abused Soma (muscle relaxer), Vicodin, Xanax, Klonopin...I'm not proud to say that I still once in a...
    beautifulblessedchild beautifulblessedchild 18-21, F 1 Response 3 hrs ago

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    Many Japanese restaurants offer a raw egg as an option. It costs 50 yen or 50 cents. I have made it my routine to take the egg to lavatory and wash the shell's surface thoroughly...
    katsuobushi katsuobushi 36-40, M 1 hr ago

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