Post

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. 33 People

    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 3 Responses Mar 24

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 2 days ago

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    My fiancé has Multiple Sclerosis and he's 27 years old. I plan to marry him and start a family. I want to start my life before the disease gets worst. I know what MS does to a...
    roselani2005 roselani2005 26-30, F 4 days ago

    Your Response

    Cancel
    It is the end of life as I knew it. Has anybody tried to have a physical relationship? Pills or toys don't have any effect, I should save the money after all I don't have a job and...
    watson8700 watson8700 66-70, M Jul 31

    Your Response

    Cancel
    Not solely might the team unambiguously determine that galaxies had regions of active star formation, however in up to 0.5 the cases they found that multiple star-forming galaxies...
    mmogooglegame mmogooglegame 22-25, M 2 days ago

    Your Response

    Cancel
    I wonder why I'm steadily gaining weight. I was diagnosed with Diabetes Insipidus two years ago and all of these stories on this page are very accurate - the discomfort, getting...
    caroline6391 caroline6391 22-25, F Jul 31

    Your Response

    Cancel
    I think I might have it I was looking more into it yesterday because something scary happened. It is really hot and humid where I'm at and I was out in it for an hour and my left...
    birdsofprey93 birdsofprey93 31-35, F 1 Response Aug 6

    Your Response

    Cancel
    I was born with a female body overflowing with male hormones. I was a boy inside. We were told I needed to be put on female hormones and something to remove my high testosterone...
    DarkwingGoslyn DarkwingGoslyn 31-35 Aug 7

    Your Response

    Cancel
    Hi there, I am 52 and have a little boy who is 10 and a husband. I am feeling very low at the moment. I used to be very physical, skiing, dancing, the gym. I am sitting here...
    felinemoonbeast felinemoonbeast 46-50 Aug 9

    Your Response

    Cancel
    I was diagnosed when I was 22 and have since been through some intense challenegs I never thought I would be able to overcome. Because of this, I have created a Facebook group...
    CHRISLATER CHRISLATER 26-30, M 1 Response Aug 10

    Your Response

    Cancel
    I was diagnosed at the end of last year. Since then my symptoms have rapidly got worse and I can barely leave the house for any amount of time. I'm supposed to be starting 3rd year...
    MichaelTWilson MichaelTWilson 18-21, M 1 Response Aug 11

    Your Response

    Cancel
    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 Jul 24

    Your Response

    Cancel
    It was about 2 years ago but we egged our yr 5 primary teacher house it was the best night ever !!
    HannahlovesHH HannahlovesHH 13-15, F 1 Response Jul 31

    Your Response

    Cancel
    Maths, science, beautiful mysteries of life begging to be explored. At the age of 5, I can remember sitting in the garden, staring quizzically at a fist full of dirt. A part from...
    NatashaRose NatashaRose 18-21, F 1 Response Aug 1

    Your Response

    Cancel
    I don't always get the experience, however when I am talking with someone or reading I sometimes taste some of the words or feel a texture in my mouth, the most common texture is...
    aBowl aBowl 16-17, M 1 Response Aug 15

    Your Response

    Cancel
    When I was still in primary school with my cousin
    custommade custommade 46-50, M 1 Response 2 days ago

    Your Response

    Cancel
    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 Jul 24

    Your Response

    Cancel
    I am a mother at heart... I have cared for children since I, myself, was a child. At 7 years old, I taught myself how to make macaroni and cheese for me and my younger brothers...
    HiddenAnger HiddenAnger 26-30, F 1 Response Aug 4

    Your Response

    Cancel
    I have suffered from pica since i can remember. REMEMBER IT IS AN EATING DISORDER AND YOU SHOULD GET HELP. It started in primary school eating pencils and the grit off the pavement...
    xsamanthaclaire xsamanthaclaire 18-21, F 1 Response Aug 8

    Your Response

    Cancel
    In my first "experience" I told you that you and I are different. This experience will just be peeling back one of the layers so you can see in more detail. I was diagnosed with...
    AshTheShade AshTheShade 31-35, M Aug 10

    Your Response

    Cancel
    There are times that I and my GFs still have a form of sleepovers and we always have a great time. Because we all have weird schedules, they are usually planned far in advance and...
    Marcette88 Marcette88 26-30, F 1 Response Aug 11

    Your Response

    Cancel
    I have pretty bad acne on my face, now been spreading to my neck and chest. It's awful because I'm staring into early adulthood and I'd like to grow out of it soon, but I think...
    NoraDysphoria NoraDysphoria 18-21, F 2 Responses Aug 12

    Your Response

    Cancel
    I'm here mainly for my best friend Hannah who I've known for over 10 years since she moved here and we met at primary school <3 We've grown up naked together, Hann declared on...
    bethizhere bethizhere 18-21, F 2 Responses Aug 14

    Your Response

    Cancel
    Demons: Acerbial and Savitsier By Paul Dale Roberts, HPI Esoteric Detective Haunted and Paranormal Investigations - HPI International https://www.facebook.com/#!/groups...
    PaulDaleRoberts PaulDaleRoberts 51-55, M 6 days ago

    Your Response

    Cancel
    I am at a loss and need some help! I went to urgent care in February because I had this horribly terrible rash that itched uncontrollably and was painful. I had clusters of what...
    SweetJFowler SweetJFowler 26-30, F 1 Response 5 days ago

    Your Response

    Cancel
    Its Lions!!! You see lions in discovery channels and Madagascar but i saw one, and i almost peed in my pants. It was back in highschool,...in my country everyone after finishing...
    suziewuzie suziewuzie 18-21, F 2 days ago

    Your Response

    Cancel
    Great candidates are in good well being, near normal physique fat and possess real looking expectations for the effects. If the individual has regions of Extra fat that will not...
    Ethan614c4ap9 Ethan614c4ap9 31-35, M 1 Response 1 day ago

    Your Response

    Cancel
    Gastronomes will likely be delighted by each the choice and good quality on the food items and by The reality that they do not have to take in in a good restaurant to take pleasure...
    Stephanzt506 Stephanzt506 31-35, M 1 Response 1 day ago

    Your Response

    Cancel
    The vacation resort is adjacent to two deep-drinking water channels so even though you only snorkel within the island The range of maritime daily life is impressive.What’s...
    Magalyid72 Magalyid72 31-35, M 1 Response 22 hrs ago

    Your Response

    Cancel
    I was recently married and working at a full time job at a medical clinic. We were having our yearly wellness exam for our insurance. Not even 2 days later, I received my results...
    Ilovetosing626 Ilovetosing626 26-30, F 18 hrs ago

    Your Response

    Cancel
    I am 16 and have wanted to have sex so badley since I was 13. I am now legal so I just want to do it. I need a girl of any build but a nice personality :) message me or heart this...
    goonteam goonteam 16-17, M 1 Response Jul 23

    Your Response

    Cancel
    I literally looked at something in my dream and said "you aren't real" and my mind woke up but I couldn't move or anything. I felt like things were after me. I don't think I'll...
    quirkyme quirkyme 13-15, F 1 Response Jul 23

    Your Response

    Cancel
    So i started talking to this guy this summer and we talked a lot over text for like 1 or 2 months... I didn't exactly like him like him but then we kinda hung out and have fooled...
    MindOfManyThoughts MindOfManyThoughts 16-17, F 1 Response Jul 23

    Your Response

    Cancel
    Today i put my two week notice in with the job i have been with for over a year to make the biggest change of my life to be a trucker. Will be hard not seeing my son as much but I...
    rgagich rgagich 22-25, M Jul 23

    Your Response

    Cancel
    i just received a reply of text message from him "good night"...I'm so happy knowing that he find ways and sometimes break the rules...really love knows no bound, no boundaries, it...
    hannagrace hannagrace 31-35, F Jul 23

    Your Response

    Cancel
    Junior high.. ugh.. the worst, it seems. I was bullied a lot by one girl in particular. I guess it was really easy for her to bully me. I was quiet, shy, and a little strange. I...