I Have An Undiagnosed Illness

Personal Stories, Advice, and Support 225 People

    Losing My Mind :(

    4 years, countless doctors, countless tests, experimental chemo, and so much pain. Why can't they figure it out? Am i being punished for something? do they make more money off of me being undiagnosed? Am I supposed to live and die this way? Confused, broken, alone and scared? Is...
    mellowmeadow mellowmeadow
    22-25, F
    2 Responses Jul 13, 2012

    After 11 weeks of testing

    and constant doctor visits, it may possibly be pseudopapilladema or papilladema, we aren't certain until I get a spinal tap. It's been miserable.
    polyglotparrot polyglotparrot
    16-17, F
    Sep 19, 2014

    Mystery Illness Is Taking Its Toll

    3 years ago I was a normal, healthy, overachieving 19 year old girl ready to go to France and graduate. I was always active and never made any excuses and resented those who did. Unfortunately, things went downhill quickly for me. It started with flulike symptoms so I went to...
    mellowmeadow mellowmeadow
    22-25, F
    6 Responses Jun 19, 2012

    Complications Of Hiatus Hernia & Gastric Reflux (g.e.r.d.)

    I have been originally diagnosed with Hiatus Hernia & Gastric Reflux (GERD) and have been attempting to manage the disorder with prescription medication and diet-modification for an extremely longstanding period. Within the past 6 years, however, the symptoms have become much...
    ironfloor ironfloor
    56-60, M
    Dec 26, 2009

    I have severe stomach pain almost every day.

    It's worst when I'm menstruating but it is basically all the time. It is like, sharp pain in my abdomen, kidneys, and lower back. Also, I am sometimes in cold sweats and debilitating pain for a day and a half, causing me to miss work and school and throwing up more than my body...
    songbirdyy songbirdyy
    22-25, F
    5 Responses Oct 7, 2014

    It has now been almost five years.

    I have spent my entire teenage years wondering what I am going to do to make it through tomorrow, because heaven knows I don't know how I made it through today. Being undiagnosed is not the worse thing that can happen to a person, but it is really ******* hard. When you are...
    Jengi Jengi
    18-21, F
    Mar 4, 2015

    I Got Sick On September 22, 2009, And Haven't Gotten Better.

    On September 20, 2009, my 5 year old son came down with a very sudden, very high fever with no other symptoms. After 2 days, he was all better, but then my sickness started. I don't know if mine is connected to his, but it would be awfully coincidental if it wasn't. My symptoms...
    infinitedreamer infinitedreamer
    26-30, F
    7 Responses Jan 1, 2010

    Life Without Answers

    I grew up with a very clear image of how medicine worked, you went to the doctor, you told them what was wrong, they gave you a diagnosis and usually a fix and then you went on with your life. It wasn't until I had been to more doctors than one can count with their fingers that...
    Tinderboxer Tinderboxer
    26-30, F
    1 Response Sep 28, 2013

    What's Wrong W/me? Why Doesn't Anyone Get It Or Understand?

    I'm a 29 year old female who used to be vibrant, energetic, positive & overall happy, with no intention of ever slowing down. I thrived on stress & fast pace of life. Out of nowhere, it seems like I've hit a brick wall going about 80 or something. I've been diagnosed w...
    ashnicbla19 ashnicbla19
    5 Responses May 15, 2011

    Last year I was a healthy 15 year old,

    loved life, doing what most 15 year old do. Then summer came. I woke up with the most excruciating back pain, I went straight to the emerge and they brushed it off like it was nothing after seeing nothing on the X-ray. Few days later I feel tingling sensations and heat...
    thegirlnextdoorx thegirlnextdoorx
    18-21, F
    1 Response Feb 17, 2015

    Im Tired Of The War Within My Body

    hello i am new here just searching for people like me who can understand and comfort each other in times of need...my story isnt short as im sure most of all the others arent also but i had a 9 month old baby and was 19 and had a happy life then it all changed i began having...
    chattytalk chattytalk
    51-55, F
    3 Responses Oct 15, 2009

    Two and a half years ago my almost perfect

    vision became instantly blurry. It is not blurry in the sense that you might think of which makes it hard to explain to doctors. Doctors also don't want to actually listen to me. They all just say you're just anxious but NO I know that is not the answer that makes 0 sense. How...
    doggielvr78 doggielvr78
    22-25, F
    Apr 5, 2016

    I Have Lyme Disease....

    But went undiagnosed for almost 6 years because at first I only experienced mild symptoms. It wasn't until I had my avalanche of symptoms and talking with a friend of mine who has Chronic Lyme Disease that I was able to figure out what I had. So that is the reason I am going...
    Littlebit27 Littlebit27
    1 Response Nov 23, 2010

    I have 13 years exp. to identified undiagnosed

    illness with mantra and changing eating and wearing habits
    nareshkumarbhutani nareshkumarbhutani
    41-45, M
    Nov 24, 2015

    So I have had this daily diarrhea

    for about 4 years now. Just one urgent voluminous mushy bowel movement every morning that drains me out completely. Scans, ultrasounds, scopes and blood work show nothing. Doctor's label it as IBS so they don't have to deal with it but I can't take it any more. I eliminated...
    Ibslabel Ibslabel
    3 Responses May 18, 2015

    I am a 20 yr old female,

    and have had these horrendous episodes since i was 14. They start off with nausea, then everything gets bright, my ears start to burn and ring, my skin flushes and my lips turn blue, then i get really lightheaded and lose balance, i start having a cold sweat, and then everything...
    LaurenBrion13 LaurenBrion13
    22-25, F
    3 Responses Mar 23, 2015

    I have had chronic nauseau

    for almost 10 yrs, after extensive tests, and owing UMASS a lot of money, I have been told I have a functional disorder. I live on saltines/gingerale, I do take 2 meds that do not seem to be helping. I miss all important functions pertaining to my son, drive around with a...
    DJR1960 DJR1960
    56-60, F
    1 Response Nov 23, 2015

    Hey there, my grandpa has this weird

    habit/illness/idek where he sneezes REALLY loud after eating. Like the whole neighborhood can hear it and it's really annoying. He won't try to hold it in at all. In fact, he even forcefully sneezes because he thinks it's healthy. He won't listen to the fact that he disturbs...
    mrhedgeh0g mrhedgeh0g
    26-30, M
    1 Response Aug 3, 2015

    I have been undiagnosed

    for 5 years. For some reason people find that number unsettling. Why is that? My life is how it is, there's no need to pity me.
    deleted deleted
    Jul 18, 2015

    My Story

     Hi Everyone, As most or all of you, I have an undiagnosed illness. The greatest contenders are Lupus or MS. Howevery I have tested negative for both. Here are my symptoms :   Low grade fever – Every night for last few months (Oct 2008-present) As...
    Keilia Keilia
    9 Responses May 3, 2009

    I know I'm not healthy,

    but no one seems to believe me! I've had a bunch of different symptoms all my life that have gotten worse over the last three years. I've had blood tests regularly, but the doctor always says I'm really healthy. The thing is I don't feel healthy! My number one symptom is...
    Mystery03 Mystery03
    26-30, F
    3 Responses Apr 3, 2015

    Could Thyroid Problems Or Iodine Deficiency Be A Source Of Your Problems?

    I want to share a URL for a video by Dr. David Brownstein that discusses the symptoms of thyroid infirmities, the problems of missed diagnosis associated with standard thyroid testing, and treatments for thyroid infirmity.http://w3.newsmax.com/newsletters/brownstein/thyroid_video...
    conceptualclarity conceptualclarity
    51-55, M
    2 Responses Aug 11, 2011

    Undiagnosed Ear Ringing, Sound Sensitivity, Head Dizziness, Shaky Vision, Etc...

    In June 2010, I began to experience these symptoms (they all came on gradually over a period of one month): 1) A feeling in my head like my eyes were falling back *into* my head. Eventually could not stare at computer screen or read. Eventually could not lie down and could not...
    aeshaw aeshaw
    2 Responses Apr 19, 2011

    Whenever I get too hot,

    i break out into red splotchy hives. i don't know. I'm weird, I'm actually getting chekced out of school right now because of it. The school nurse said it might be due to high blood pressure.. i don't know i hope they figure out what it is, hopefully I'll go to the doctor and...
    CrazyAndLazy CrazyAndLazy
    16-17, F
    Nov 24, 2015

    Since last May, I have had a flurry of symptoms

    and I'm currently seeing a Neurologist...who I don't think believes me when I say what's going on. Since last May, I have had spasms. Not full seizures,they just last a moment and I stay conscious but I lose all control of my body as I'm shaking like a wet dog or throwing my...
    dessie83 dessie83
    2 Responses Feb 28, 2014

    I have undiagnosed condition

    since age 14 I'm now 22.I missed out on a lot on my life because of it .Over time it's only getting worst and the medication are not working anymore .I know even if I do find out what's going on treatment may not work.I been to many specialist doctors test .Some things show up...
    kellner27 kellner27
    18-21, F
    1 Response Dec 22, 2014
    Pierce7891 Pierce7891
    18-21, F
    1 Response Oct 7, 2014

    Where. Do I begin because this will be long.

    All my issues started back in 2006. I started feeling like an elephant was seating on my chest and braking out in hives and having really bad anxiety attacks because I thought I was dying. Went to er and was told I had pleurisy. From then on everything has gotten worse. I now...
    sweetebony4 sweetebony4
    36-40, F
    1 Response Sep 20, 2014

    Living Through Hell

    First, I have a history of fibromyalgia, anxiety and depression.  But about a month ago, I started getting a very odd array of symptoms.  Here goes:  My body shakes all over, my teeth chatter, I have a very fast heartbeat with palpitations.  I feel like my...
    candycat candycat
    6 Responses Jan 3, 2009

    Excessive Forehead Sweating,hot Flashes,hallow Dark Circles Around My Eyes,

    Hello last year 2011 I began getting hot flashes a few months past and I started getting excessive sweating on my forehead that I began getting Hallow dark cicrles around my eyes sometimes I feel tired weak when I walk I sweat from my forehead I get hot flashes my face of the...
    JesusGonzales421 JesusGonzales421
    Aug 14, 2012

    Schizoaffective disorder.

    Seeing and hearing things that aren't real that cause severe depression
    Totalwar1214 Totalwar1214
    18-21, M
    1 Response Oct 7, 2014

    I know something is ****** up about my thoughts.

    .that something waits to destroy me in my mind..I don't know how or why it's there..all I know is I don't deserve it..and if I do..good..then this is my hell..all I can say to this thing that lives here is.. you still haven't beaten me yet..
    Cocrispy Cocrispy
    26-30, M
    1 Response Mar 29, 2016

    The Voice Of The Lost

    My name is Jennifer. I'm 16 and I have been living undiagnosed for three years. And this is my story. Life changes in the blink of an eye. Everyone says that. But no one actually believes it till it happens to them. My life changed one night and it hasn't been the same since...
    Jengi Jengi
    18-21, F
    5 Responses May 26, 2013

    It has been four and a half years

    since I got sick. I have extreme abdominal pain, joint pain, degenerative disc disease, and I am always tiered. I don't know whats wrong with me, and I fear I will spend my entire life at home, socializing with people on the internet. Being sick, sucks. Being undiagnosed is...
    HelloGoodbey HelloGoodbey
    18-21, F
    4 Responses Mar 19, 2014

    I have a Demyelinating Disease.

    MS is also one of these diseases but mine is a new type. I have lesions scattered through out my brain and on the underside of my Corpus Collosum and they are multiplying My doctors have never seen anything like it before and it is progressing at a fast rate. In a year I went...
    BCulp38 BCulp38
    46-50, F
    Nov 23, 2014

    I have been dealing with my undiagnosed illness

    for 14 months now. It started Jan 2013 when I had a 36 hour flu. After that I have had many problems that are debilitating and seen many doctors for help. I overheat very easily - even if it is 20 degrees, I can get heat exhaustion! I also sweat way way too much, and according...
    Androgosane Androgosane
    36-40, F
    1 Response Mar 10, 2014

    I'm completely lost. I've been playing the

    Irish sport of hurling since I was four years old and fell in love with it. I even played for my county. Over the years I've had multiple broken bones but nothing could hold me back from playing. That was, until, I had a severe impact to the chest and have been unable to breathe...
    aliken98 aliken98
    18-21, F
    3 Responses Aug 21, 2014

    Help With Mystery Illnesses.

    Hi all, I wanted to share a bit of information about an illness I have been diagnosed with for some 8 years now. I suffered mystery symptoms for years. My story is very similar to a lot of your stories. I have a rare condition called Behcet's syndrome. I don't want to confuse...
    magirose magirose
    1 Response May 9, 2013

    I have been living with an undiagnosed illness

    since birth. I think its time that we join together in making sure doctors take our cases seriously. In that spirit I have created iamundiagnosed.com. A support site for people with undiagnosed illnesses. This is a community site and I really want other people to pitch in with...
    iamundiagnosed iamundiagnosed
    26-30, M
    Oct 21, 2014

    I had/have leaky gut.

    many docs don't recognize it, tho. and treatment is done with home remedies.
    DixieLandDiva101 DixieLandDiva101
    36-40, F
    Nov 24, 2015

    I have been told I have small fiber nerve damage

    but we cannot find the cause. I'm being told it is idiopathic. How can that be? I have been given meds to try and mask the pain and tingling and fatigue but nothing helps...it usually makes things worse. I'm going to see my neurologist Monday and I'm afraid he won't have any...
    tmd1982 tmd1982
    31-35, F
    2 Responses Apr 10, 2015

    Always known something is off with me,

    some things i have never been able to fix. Just never knew at all what could be wrong with me until i started going to my school nurse talking about my worries and what goes on in my mind. She automatically assumed i was depressed and had anxiety which i had never even thought...
    ThinkingCat ThinkingCat
    22-25, F
    Apr 10, 2015

    i think im a kleptomaniac i have taken staplers,

    headphones , and rulers from my high school. it seems like nobody cares though cause all my teachers see the school headphones and dont say anything.
    nobumbump nobumbump
    16-17, M
    Oct 8, 2014

    I am severely depressed

    and have extreme anxiety about everything
    Indeciciveme Indeciciveme
    18-21, F
    2 Responses Oct 7, 2014

    I just know there is something wrong with me.

    .. I don't know what it is yet, but someone will find a illness I have
    kiwigirl2021 kiwigirl2021
    13-15, F
    Nov 24, 2015
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