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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

    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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    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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    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

    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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    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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    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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    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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    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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    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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    ...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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    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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    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 4 Responses Mar 15, 2010

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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 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 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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    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 1 Response 6 hrs 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 4 hrs ago

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    I have Multiple Sclerosis. it has really messed my body up. Weakness in my legs and super sensitivity on my left side (which is dominant) that causes pain. I also have extra...
    DaveShaved DaveShaved 46-50, M Jan 12

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    I have Multiple Sclerosis and I'm better off than most, blessedly
    AsgardRain AsgardRain 41-45, F 1 Response Jan 19

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    I heard a quote recently that I really enjoyed: "The stars by day, I always think that's fascinating. The universe disappears. The more light you have [from the sun] the less you...
    hmmhmmhmm hmmhmmhmm 26-30 Jan 3

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    I have my next MRI this coming week to make sure the inter-ventricular neurocytoma in my left lateral ventricle is not growing. We haven't done a biopsy due to the complications it...
    llventricle123 llventricle123 22-25, F 4 days ago

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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 22 hrs ago

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    Five years ago I was diagnosed with fibromyalgia & it absolutely ruined my life, causing me an extremely humiliating, very public fall from Grace. My symptoms effected my job...
    xxTayaLionessxx xxTayaLionessxx 41-45, F Dec 29, 2014

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    So much pain. So hard to control. Nerve pain cause by damaged myelin caused by Multiple Sclerosis. I've found compression of the affected area helps, but can't leave it in place...
    DaveShaved DaveShaved 46-50, M Jan 16

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    Nerve damage, caused by myelin damage, as a result of having Multiple Sclerosis.
    DaveShaved DaveShaved 46-50, M Jan 16

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    MS is NOT reversible. You have probably gone into a Remitting stage. It happens, it cant be predicted. It absolutely CANNOT be reversed with today's technology. Do your research...
    DaveShaved DaveShaved 46-50, M Jan 16

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    Use of a global debit card is limited to the primary account balance, thereby keeping the holder from racking up debt as a result of its own use, or being charged interest, late...
    Darronbanksso0 Darronbanksso0 31-35, M 1 Response Dec 29, 2014

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    its kinda cute that 8 people in my life have truly told me that they loved me. one guy was my "boyfriend" in elementary (primary) school, but he was a total idiot and called me...
    alliixxxx alliixxxx 13-15, F 1 Response Jan 1

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    This is my first time posting my story. Would really appreciate advice from Christian Twin flames thank you!I was in a long distance relationship with a man that gave me extreme...
    misssimple misssimple 18-21, F 1 Response Jan 6

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    I was originally diagnosed with ADHD when I was little, as I got older they changed it to Aspergers, now since aspergers is no longer a diagnosis i have Autism spectrum disorder...
    13mtm80 13mtm80 18-21, F 1 Response Jan 7

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    I might not have the disorder. I don't know. I did struggle at primary school...BUT I think could do simple maths. I think it wasn't until I got to about 10-12 that I really...
    1lonelydaisy 1lonelydaisy 41-45 Jan 10

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    More of what I have learned... This comes from my recent therapy session as well as what I have learned from the following book: (I highly recommend it!) "Overcoming Social Anxiety...
    ludix ludix 41-45, M Jan 13

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    I have an irrational fear of holes.. Just the word makes me cringe. So this will be short. I googled it last year for the hell of it and up came trypophobia . I know the reason for...
    heyitsabike heyitsabike 31-35, F 2 Responses Jan 14

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    Myself and my primary care physcian spent 6 months trying to convince doctors that My son has pancreatitis. I took him to many different hospital emergency rooms looking for...
    cindamommy cindamommy 46-50, F 5 days ago

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    I realised the other day that I have drastically changed. When I was in primary school I was what some people call a sheep. I used to want to look and act like all the girls did in...
    CeBeY1 CeBeY1 18-21, F 3 days ago

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    My son was diagnosed 2 years ago as a senior in high school. He's in college now and we've been through his primary care doctor, 2 dermatologists, 1 lancing, 2 scalp surgeries and...
    Helpingmysoncope77 Helpingmysoncope77 36-40, F 2 days ago

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    I've been reading some stories of those who suffer from fibro and have become so despondent from so much pain for so long, & have become so depressed from the effects of fibro on...
    xxTayaLionessxx xxTayaLionessxx 41-45, F Dec 29, 2014

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    Ok here it is. I also have Anorchia. I was born in 1975 to a single mother. At about 3 or 4 years of age I had exploratory surgery but the surgeon only found a small nub of one...
    emtchris emtchris 36-40, M 2 Responses Dec 31, 2014

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    I used to be someone who contributed to society, someone who used to matter. I made a difference in peoples lives, I saved lives, I changed lives. I was a nursing supervisor, well...
    xxLionessxx xxLionessxx 36-40, F 3 Responses Jan 6

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    I have hyperhidrosis and Iv had it for quite a long time. I never knew what it was for a long time and to be honest, I thought it was normal. I was maybe 6 or 7 when I would...
    Joanna2468 Joanna2468 13-15, F 1 Response Jan 10

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    I know what could have made me like this. I've never been tested for reasons behind my problems, (I was told I have social phobia and I know that but I'm sure I also have APD too...
    1lonelydaisy 1lonelydaisy 41-45 Jan 14

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    Women's roles in the Bible The status of women in the Christian Gospels Sponsored link. Women in ancient Israel: Women's status and freedoms were severely limited by Jewish law...
    The1960texan The1960texan 51-55, M 11 hrs ago

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    I have dealt with strabismus my entire life. I've had 4 surgeries from the age of 6 months old to 7 years old just to save my eye sight. I'm so grateful for all my wonderful doctor...
    n0nnahss n0nnahss 22-25, F 1 Response 17 hrs ago

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    I am so tired of feeling like I have to put on a front for everyone and pretend that everything is ok and all rainbows and sunshine so cps doesn't take my daughter away cause...
    RedsSaphire RedsSaphire 31-35, F 2 Responses 13 hrs ago

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    It started off with just an ear for each other. He was hurt. I was hurt. Me being me, not afraid of anything or rejection, sent him a msg and told him if he'd like to talk about...
    Cricket75 Cricket75 36-40, F 3 Responses 11 hrs ago

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