Lost in the Land of the Undiagnosed

 

Sometimes I feel lost. Lost behind the world of the diagnosed.

There are no fundraisers for me. No walks, no T-shirts, bracelets or ribbons. I am the lost within the lost. Aren’t we all in some respect? Trapped by our bodies and lost to the world. A Spoonie KNOWS what it feels like to cry in that hidden crook, lie about how we feel, and watch the world leave us behind. The feelings of loss lead us to a path into the lost.

  But what of those that have no name? We have no answer for friends who care enough to really hear the answer to,” How are you doing?” We come across as liars. More so with each month, year, or decade that float by leaving nothing but a wake of pain in its path. We loose more and more friends. Those that were steadfast for 10 long years finally throw in the towel. We are convinced that these are the reason, which at least is what we think.

Okay, enough with the “our”, this is painfully with a self involved touch, about me. Perhaps I am alone in feeling this way.

  I find kinship here in the boards. I know I am not alone in my suffering. And for that I will forever be grateful. But I admit the green monster that creeps in my shadow. He’s envious of the organized fundraisers and wishes he could have a name. He is Envy. And he makes an ugly person of me. On the days he sticks his head out, I am nasty. I may be snappy or rude, but I am ALWAYS jealous and angry about being jealous instead of supportive. Even writing it makes me feel like I’ve an ugly heart.

  How come I can not find it in me to just be glad to have the sisterhood? The one’s offering an ear or hug or spoon. And like schizoid-typo, I am both. I wish I could walk for Lupus and MS; while in kind, I long for recognition for MY mystery. It is just as real, but how does one address the invisible? How can I get to healing myself when I’ve no idea what’s wrong.

  It’s autoimmune they say. Those are neurological symptoms they say. But you are an enigma is the written diagnosis for me. Hurrah! I’ve not only felt lost behind those with a name, but I’ve lost my friends. I’ve lost some family. And most disturbingly, I’ve lost doctors who lost patience in my frustrating condition. *sigh* All loss, and lost.

   Why on earth should I be jealous of a named chronic condition? Why do I crave it so? Perhaps I will never know. It just is. But my fellow Spoonies…I will always have love for you and hope to never feel lost in our connections!

Alas, I will continue to creep among the diagnosed. Hopeful for their comfort and financial gain to work that sucker to a cure! All while envious of their Names in the tabloid! These are ugly diseases, but as I’ve learned in here, always existing in beautiful carriers.

Written by Sonja McDaniel (sacredjinx on our butyoudontlooksick.com message boards)

I’m a 37 year old female undiagnosed for 12 and a half years. I live in the SF Bay Area surrounded by my wonderful husband, my mom and all of our rescued critters. I’m living proof that you can’t judge a book by it’s cover! Punk looking, art making’, book reading freak!

©2024butyoudontlooksick.com
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  • Katy

    I too am undiagnosed for three years. “They” say I have epilepsy but they don’t really know what caused it (just like most epileptics) I’m going to a new doctor soon to see if he can help, after doing some more research I’m thinking I might have lupus. It’s just like you said, I crave this diagnosis, even if it’s not necessarily “good” news. My mother was appalled that I would “want” lupus, she even got a little mad at me. I’m not wishing for Lupus, it’s not like there’s much they can do but at least I could put a face to the name (or whatever the saying).

    Speaking of invisible illness…..The other day I was feeling REALLY crappy and I was riding the bus to work. I was sitting in the area of the bus reserved for the elderly and disabled (if there are no other seats). A woman asked me to get up so that her husband could sit down. I initially felt guilty, then anger. Just because I don’t look disabled doesn’t mean that I’m not, I wanted to get up and tell her “I’m sorry but I have epilepsy can someone else offer up their seat?” But I didn’t, even though I felt like I might faint or seize I got up because I was too tired to argue, and I didn’t really want to publicly announce that I’m epileptic (or whatever I am).

    No one I know understands, the constant wondering if this new symptom is related or not to my seizures. I’m in constant pain, headaches, stomachaches. I’m grateful that I’m almost a year seizure free, I’m grateful that the medication takes care of the symptoms of my undiagnosed “thing” but I hope some day I can find an underlying cause.

    Katy

  • This is so so true! Thanks for putting it into words. It’s so convenient for them. They put you on meds and then they can blame your mysterious ailment on side effects!

    Mo
    memorymo.com

  • Tay

    Hi, I am in your boat here, too…I am a 21 year old woman too – dealing with an extremely frustrating undiagnosed illness for the last 9 months – started with intense abdominal pain – now I have reflux disease issues, severe fatigue, sinus problems, weird nerve sensations, and the most troubling symptom – an inability to get a full satisfying breadth….been to so, so many general and specialist docs…none of the approaches suggested have cured me of any symptoms and some just dismissed me as being overly anxious – I have never been treated for anxiety or depression before this strange illness- yet being this sick for so long makes me both depressed and anxious – Id be lying if I said I wasn’t depressed right now – but i KNOW there is something else physically wrong with me – and the doctors don’t believe me

  • Lip of Roses

    Yes, doctors can only think about the average man. One quotation says: ‘The biggest illusion of a doctor is that he will always find the same body in front of themselves. xxx

  • Lips of Roses

    Hi everyone.
    I am deeply sorry to read so many stories of unanswered suffering. These things should never happen…
    I too live in the same land as you do: extreme suffering for 11 years and more, and without a proper diagnosis (I had one until one point, then I had hypotheses and incorrect diagnoses).
    My story is extreme. I have suffered and am suffering in pain 24/24. I really am at my wits’a end and ready to really end this misery.
    I hope to soon have the energy to post my complicated story.
    For now I just wanted to say that many things you say resonate perfectly with me: I have lost my partner, my career, and much more to this hell; and on top of this I have had many people diminishing my illness, pushing me to act as if I were not ill, which I learnt to do as much as I could… all very sad indeed.
    More soon from me. In the meantime tight hugs to all of you. <3

  • Her Holiness

    Why is it that when you have a collection of symptoms that boggle your doctor’s (possibly deficient) mind, their knee-jerk response is to push (not offer, PUSH) psychiatric medication on you? Repeatedly! And why, for the love of Mike, is it so hard for them to allow you to say no to those meds? Do you just want to shut me up or do you not believe me when I say they don’t help me? Did you not notice what happened when I agreed to try that avenue?

    Listen, doc: I know the drug reps bring delicious pastries and lunch platters, that they leave handy mugs and nifty pens like sweet little drug fairies, but for some reason, I don’t think sprinkling my existing daily struggles (& failures & attendant shame&heartbreak) with random unpleasant side-effects–while severing my emotional connection to this world–would be all that helpful.

    And if my continued refusal bothers you so much, there’s a pill you can take for that.

    PS Anybody else feel like some doctors spend years and years in med school learning how to read flow charts? Flow charts that only include the most typical symptoms of the average-est patient? Not all docs are this useless, but my “I’m broke because for nine years I’ve been too sick to hold a job” insurance severely limits my choices.
    my email: [email protected]

  • Her Holiness

    Yes, and we also have Dr Wormser and his horde of disciples…choose carefully.

  • Ridley

    Understand your situation completely!
    constant diarrheas and annoying muscle pain are my main symptoms. but there are more. All of them i have daily since January 2014.
    I had so many investigation by doctors but except from some little things which cannot cause my symptoms nothing was found. The doctors say, I am healty. But i feel exactly opposite. Most strange are the body and skin changes. I have absolutely no idea whats going on in my body…. 🙁

  • rusty

    try researching parasites and fungus.i was miserable for 2 yrs and went through every test and 12 different drs.finally treated for parasite with stromectol and fungus with fluconazole.hope this helps.

  • Sam Avon Lady

    I have been undiagnosed for five and a half years. My ANA has been extremely elevated but even after pints of blood and numerous test still don’t have a name for what ails me. My extreme fatigue started while I was pregnant with my youngest and was written off as being pregnant with two kids under 5. When it continued after birth then it was “just having a newborn with two other kids under 5”. My doctor has gotten to the point of throwing her hands up and saying “Try this because we are out of options.”

  • Jake

    Sorry I meant to post in general discussion, not as a reply to Samantha, apologies.

  • Jake

    I thought I might share too, for no reason I suppose. I believe we should just be heard is all. I live with an undiagnosed illness for almost 2 years now. While a couple of diagnoses have been made initially, they all turned out to be wrong or unrelated with my actual symptoms. And there’s a myriad of those symptoms. Most debilitating are paralysing pain, constant diarrheas and undigested food in stool, rancid odors, bad breath, nausea, headache, fatigue, massive brain fog to name a few. And yes, apparently you can “live” with all that and more. What sort of life is that though? I am 20 yrs old, formerly strong and on-the-rise weightlifter and software engineer in the making. The disease made me slow “stupid” and fatigued. it forced me to quit uuniversity, abandon the sport that I love, made my relationship with my girlfriend a sexless disappointment since all I do is let her down and drag her down. Now I will be forced to fight with my last breath to get and hold down a job at a fuckin supermarket or McD’s just so I can afford 4 or 5 bland foods that I can somewhat tolerate (I don’t immediately almost die after them…). Now the 20-year-old happy, driven and eager to see the world young man that I was will finish this online whining to go cry himself to sleep and wake up tomorrow just to endure all that and one more thing. Probably the worst of them all, is the absolute lack of understanding or any sort of compassion because “technically” you are not sick. All I see is total indifference, or worse yet blame. People look at us like it’s somehow our fault we suffer that way, because we should be able to snap out of it or sosomething. Cheers to that.

  • Samantha

    I’ve been undiagnosed for just over a year. I get these horrible abdominal pains that leave me shaking uncontrollably. I can’t sleep and constant nausea leaves me unable to keep much down. I can barely stay awake to drive and I’m terrified to wreck my car. I’ve had tons of tests run on me and been to countless specialists who have found nothing. As a previously healthy 20 year old, doctors seem to assume I’m drug seeking or exaggerating. So they won’t do anything but run more and more invasive tests.

    Being sick has taken over my whole life. I’m happily newlywed, and my husband is so good to me. But because of my constant pain we are in a sexless marriage. I’m afraid to drive so he has to do all the grocery shopping, all I do is lay around miserable. I feel like he got a defective model. I had to sell my horse because I can’t even imagine riding anymore. I had to drop out of college because I couldn’t make it through class without throwing up. I’m not sure what the point of me posting this is. I’m just so depressed and seeing other peoples posts at least I know I’m not alone

  • kingsley mary

    What we plan with thoughts and actions for our future so we can enjoy retirement/older age, right? Life can change drastically when a rare, incurable disease such as Systemic Scleroderma attacks our bodies without warning! My life started changing in Fall 07 in my hands, progressing fast to include weak/painful muscles, swelling, loss of range of motion and depression until 3/30/09 diagnosed with Systemic Diffuse Scleroderma which no one has ever heard of until diagnosed and adding insult to injury, neither have most doctors, leaving patients to fend for themselves on how to find treatment for symptoms because Scleroderma cannot be treated as yet. Most Scleroderma patients look normal in appearance but the damage is extensive on the inside of our bodies, stage 4 kidney disease, hiatal hernia, pulmonary fibrosis, aneurysm in heart, GI issues, skin changes and Raynaud’s in hands & feet are just a few of my Scleroderma challenges. I am one of the more functionable patients and grateful I have doctors who care and support from Sweetheart, family and friends. Some patients don’t have either doctors nor support and rely on facebook Scleroderma chat groups for advice, love and support from people who relate and understand what they are experiencing. My life has changed dramatically from 5 1/2 yrs ago and I am grateful for my Scleroderma journey because the more I reach out to others the more rewarding my life has become. I am a patient advocate helping to educate and promote public and medical awareness of the desperate need to recognise Scleroderma as the life threatening disease it is. Scleroderma was first documented 260 yrs. ago, now we want awareness to help alleviate the horrible suffering this disease causes physically, mentally and emotionally. Please help. EMILL:[email protected]

  • Ridley

    I really understand how this feels.
    One year ago I never thought sth so strange and also scary could happen to me. I was healthy always. Only from time to time had a little flu.
    But now i am more than one year with an undiagnosed illness.
    Other people really cannot understand how this feels and their advices and comments are neither helpful nor makes it a better feeling.

    The thing is, it does not help a little if you know which diseases you dont have. Because you are feeling sick anyway and more bad you just dont know what is happening in your body what it means for your future.
    As long as the illness is unknown nearly all would be possible. And this is the very scary aspect about an unknown disease. You dont know what will happen next. Maybe its too late then. This is sooo scary….
    Also it consumes so many power to search for new doctors and appointments and explain your story ever and ever again…
    Hope everybody will find out and get a good treatment.

  • Ridley

    Now I am a little more than one year with daily symptoms.
    First it started with some minor issues. I was not very concerned to that time.
    But after i had it more than 2 months i started to let it check by doctors.
    I developed a not normal daily digestion since March 2014.
    Had uncomfortable feelings and pain at various places in back, abdomen, later also strange tissue burning pain in butt and face, for only to mention the most strange areas. Also i had and have some various symptoms happening more or less randomly from time to time.
    All investigations (and i had almost all) came out with normal results / nothing found.

    During the time of my illness i started to notice that my hands / fingers, arms, feet and legs and also my butt and face (and the most strange the small area between ribs and the “muffin top” and also the pelvic girdle) getting slimmer and slimmer but i did not loosing weight during the whole time. I lost weight unintentional and without any idea why it did happen in the early summer, but even during the time from Sept. until Dec. as i got more weight around 4 kg the melting in the mentioned areas was and is going on. The only idea is i am loosing subcutaneous fat at that areas while my “muffin top” is getting more big. That could be called a lipodystrophy.
    But how can i get that? Normally HIV patients who take antiretroviral medicine can get it or its happen already in the early childhood, if its genetic caused.
    Both its not the case with me.
    Cause of that i have a bad looking butt now and i feel it all the time because my pants are too wide for it now. also its uncomfortable when sitting at any place.
    Also i developed to a very “veiny” person. You can see almost every single vein at my hands, arms, even fingers and the most scary my eye lids.
    My face changed so much that even my mimic is affected because the skin is layered differently.

    Thats all bad already. But then i noticed that also my skin is changing.
    Not that only my skin is changing more and more to pink-red color (sometimes my face looks like i have a sun burn but i never take a sun bath), also i developed some strange red-pink areas and structures in my face. They are not blood vessels, but dont know what it really is. This is really worry me and makes me shy when go outside.

    All say its not so bad yet and i should just live with it. But hey… this is not normal whats going on there.
    And this is the most problem: The not understanding of other people. They dont believe its caused by an unknown disease. But the fast time it needed for develop and all the other symptoms makes it very clear for me. It cannot be normal. I dont see other people outside with this kind of skin changes.

    If i talk to doctors that my subcutaneous fat is melting away i see only faces which say “what the f*** is that crazy guy”. Even if i show pictures which i made for prove it they are not really concerned. Yeah, its not their body which is melting away, haha…

    Also its very difficult to deal with my family and friends. For them its clear: The doctors dont find anything so i must be healthy. Yeah, its all in my head. And my mind makes the subcutaneous fat melting away. true story. If i can do that, i can change me also into Brad Pitt only with the power of my mind…

    The thing is, i dont think that all the changes are reversible and also i dont know what really is going on in my body. Thats makes me so scared and i need a diagnosis as fast as possible. But i still did not get one and always have so long waiting time until see the next doctors. This is also a gambling game. Will the doctor listening to you? will he believe you? Is he open for special investigations which none of the doctors had done before? If not then the waiting for the appointment was just useless and again the weeks are passing….
    Will I find out some day?

  • Molly W

    I had a “toothache” 12 yrs ago. I was 32, my boyfriend and I were buying our first house, had just been promoted to a managerial position at job I loved. My boyfriend had fought ( and won) a battle with Leukemia when I was in my mid-upper 20’s. I

  • CynicalPragmatist

    I’ve been in the “mystery illness” space for about 2 years with a condition that causes fatigue and joint pain. Don’t know what it is. It could be SLE, but we don’t know yet. The doctors know I have an autoimmune condition, but I also am on County for my insurance.

    I am single and want a partner, but I had to stop dating – not only does it use up my spoons to even go on dates, but having to disclose to a new person that I have a mystery illness? Ugh. I’m constantly exhausted and in pain, and until I actually have a name to give to this, feel like I’m just revealing myself to be a boring, lazy hypochondriac 🙁 I’m already 41, when can I start meeting people again???

  • Missy

    I brushed my teeth with baking soda. Noticed my teeth started hurting…didn’t think it could possibly be from the baking soda. Was brushing my teeth one day, when it went off like a lightbulb “Oh my God, it’s the baking soda.” I have severely damaged enamel and ground down teeth, from brushing so much. The dentists all think I grind my teeth at night. I wake up in the morning with my my mouth open. Keep it open constantly. Hurts to close. No dentist will diagnose or treat. I know it’s my teeth, but no one believes me. 🙁 Now an unfinished root canal has left me in agony. Off to a new dentist tomorrow. Sigh. 🙁 So, so scared.

  • 1Kate!

    “western” medicine has many gaps when it comes to systemic illnesses. Find a Functional Medicine doctor/clinic. I was sick for 3.5 years and it wasn’t until I found a functional medicine doctor did I find out what was wrong with me and get healed!

  • kaypol

    Hi Anna Marie,

    I totally understand you… unfortunately not having a diagnosis downplays all your symptoms… it is as if you are less sick than others and you have to constantly justify yourself. I was undiagnosed for about 4 years and it was always a challenge convincing people and most of all medical professionals that I have truly something wrong with me….

    I am now a University student just about to graduate and I am conducting a research exactly on what you’ve just said; the power of diagnosis, the legitimacy it provides to your illness experience and the role of the doctors in all of this. At the moment I am looking for participants to interview (no big deal; just an short online interview to get to know their personal experience). I would really appreciate if you can help me out! Should you be interested, kindly reply back or send me an e-mail on [email protected]

    Thanks and all the best for the future – i really hope everything will sort itself out for you! Stay strong!

    Kay from Malta (20 years old)

  • kaypol

    Hi Glanton, I couldn’t help not being struck by your comment as I really feel I can relate to what you’re saying, especially the fact that you decided to leave the doctors behind in all of this, and seek to move on without seeking medical approval…. I am a 20 year old University student studying medical sociology, and am currently carrying out a research study targeting exactly people who are passing from your experience. I would greatly appreceate your co-operation. Participation would only involve in a short online interview… If you’re interested, please just let me know by replying or sending me an email on [email protected].

    Thank you, and stay strong!

    Kay from Malta

  • hercules25

    Even if anyone lives on the E Coast we have LLMDs out this way too.

  • hercules25

    Glad they caught it early. I have been in treatment for 1.5 years and yes it is nothing to take lightly. Lyme dx is passed over way to much. Dr figures I will be in treatment for years to come. I have not tried Doxy. I did have a PiCC line for a few months administering Roceohin daily. So glad you are aware and found an LLMD, finding the right Dr to treat us correctly and
    educate us on detox, herxing, supportive care and so on is sooo important. Good luck on your treatment as I know how things gets harder from treatment.’

  • EJC

    I have been dealing with this same situation for a year. BUT, the slight hope is I found the tick burrowing into me last year in October (Found myself in an ER by December of last year where I was misdiagnosed and ignored when I told them of the tick) – I am now seeing a Lyme Literate MD and have had the IGeneX tests run – for all co-infections as well as Lyme. I am hoping beyond hope I caught it early enough to beat the bacteria out of my body. I have been on Doxycycline since the end of July and am seeing ever so slow and slight improvements. So I am hoping this has been caught early enough to beat the bacteria out of my body. Lyme is nothing to take lightly, it literally kills and stereos all aspects of one’s life. I wish you the best.

  • EJC

    Please, get yourself to a Lyme Literate MD. One of the best in the country, if not world, is in San Francisco – Union Square. Lyme is becoming endemic to Northern California and if you live with your rescued critters, there is a better than good chance you are dealing with chronic Lyme. I am not joking, nor is Lyme something to scoff at. BUT, if it is diagnosed, it can be beaten into remission and even out of the body. You owe it to yourself to have this looked into.

  • Anna Marie

    I’m a 21 year old ciswoman, undiagnosed for 8 years. For the early years in middle and high school, numerous doctors didn’t believe me, or thought I was exaggerating when I explained my symptoms and said they were every day. Now that I’m developing (or finding) an anxiety disorder, I have another round of doctors telling me that my anxiety is causing my symptoms, and not my chronic battle against the illness causing anxiety.

    I have to constantly explain and justify myself to peers, family, and professors. Being healthy is a privilege, and having a name for your illness is too. I hate dealing with people asking invasive, stupid, or presumptuous questions. “Do you drink lots of water?” -as I hold a water bottle in my hand. “If the doctors can’t find anything maybe you’re imagining it.” “At least it’s not cancer.” “At least you’re not dying.”

    Friends and doctors seem to think that as long as I’m not dying I should be satisfied. Nevermind that I’m miserable every day, at least it’s not life threatening. It’s just like any other system of privilege and oppression, they get sick of hearing about it, but they don’t have to live it.

  • Jennifer

    I am 22. I am a soldier in the army. I am a female. I have been sick for 4 years now. I have no answers and the doctors do not care enough to listen. I am progressively getting worse. I have to work out every morning. I am gaining weight even though I don’t eat much. Soon I will be kicked out because I am no longer fit to serve. I am depressed because I only wish to feel better. I only wish to find some peace. I am miserable. I am glad that I’m not alone.

  • J Glanton

    I’m a 36yo male, undiagnosed from 14. Twenty-two years of incredible and lonely pain. I spent the first four years in and out of the hospital, to no avail (of course). At 18, I decided very firmly and, I guess, angrily, to leave the doctors behind entirely.

    This method has been mostly successful. I generally dismiss and/or ignore the pain, or hide it, or drink. I’ve built a successful business and started a family.

    But the pain is catching up with me, and making me feel very lonely again, and (not surprisingly) suicidal. For what it’s worth, a diagnosis (even made up) would have helped.

  • jennyct

    Wow, there are a lot of people out there with undiagnosed problems, and I’m sure some of them are serious, some debilitating and only a few anxiety related. What gets me is that if the tests do not show anything, doctors firmly believe there is nothing wrong. In 1995 I started having tooth pain and nausea, had a root canal and was told the continuing pain was in my gums. 15 years later, even though my dentist told me the xrays were fine, I ended up in the hospital with a large abscess. Even MRIs didn’t find anything – it was a CT scan. I was living with this infection for years of my life.

    I also had stomach pain on and off since 1994. Thought it was lactose intolerance. Had all the tests… negative. Then continued chronic pain. Finally talked to a surgeon while there for something else. She did all the same tests again. It found something – a non-working gallbladder (why did it only work periodically?). During surgery she also found a lot of adhesions. Now, I still have stomach and back pain, but I ignore it because I can’t go through wasting money, time, and being told I need anti-depressants. I also have huge sinus cysts caused by “unknown etiology” and only helped with antihistamines… which I cannot take because of my stomach, which has chronic gastritis caused by “unknown etiology.”

    So, I hear you all, it’s frustrating. I went back to school (with all my tummy pains and muscle cramps with a fake smile on my face) and learned about biology, anatomy, physiology, and genetics. I learned that medicine has not advanced to the point where we know about all the nuances in every individual that causes pain and suffering. I learned that things brew for years before it’s clinically diagnosable. Which is sad because people give up trying to find out, and then it’s at a point where they can finally get help.

    I’m at another point in my life where I need to get more answers because my stomach is getting worse. And not only is it frustrating, but it’s scary… because I want it to be something that can be cured or managed, but I won’t know until I go through more radioactive IVs and invasive tests (colonoscopy, endoscopy, sinus surgery).

    And then there’s the money. $80K in 7 years…

    Good luck to you all, please post if you find out what helped you.

  • Trish Campbell

    I have been in bed for the last 4 days. Extreme fatigue, body and joint pain, diarrhea, nausea, abdominal pain, flankpain. Even getting up to go to the bathroom was a challenge. I finally could stand lying in bed any longer so i went to work. That was when i noticed it and it scared me to death. I have 2 bruses on my back but i didn’t bump it or hurt it in anyway. The first one is 6 inches by 4 inches across the swell of my back. It is purple and splotted. The second is 8 inches by 6 inches and red. This one is between my shoulders. Both are very painful. The diarrhea and nausea are gone but i have awful pain and burning in my stomach when i eat. Extreem leg cramps. On my left leg outside thigh i cannot even touch it without the pain sending me through the roof. Had a xray done. Didn’t find anythin wrong

  • Heather Derek

    I’m so sad to discover that many of my “Friends” ( adult women in the 40’s ) have been mocking me and talking about my “illnesses – which there are many, behind my back. It’s so hurtful that I would be empathetic about others “problems” yet they have none for me. So sad 🙁

  • sticks

    Im currently suffering something and am undiagnosed as well. For the past 6 months Ive been getting spells where i feel like im about to faint. It was happening maybe once or twice a month but has progressed to once or twice a week if not more. On top of those i constantly get very lightheaded. Have a severe earache that has lasted a couple months, suffering migraines and headaches. And cant sleep properly from the pain which triggers another migraine!! I was dismissed by many drs as just having a virus. I finally found a dr who has run tests and referred me to specialists. I recently spent 4 days in hospital where i actually did faint. The drs discharged me saying its nothing serious and it just happens. To me thats crap. Saw a specialist for my ear who before even listening to my symptoms properly or looking at my ears dismissed it as stress related. The only reason im stressed is because i dont know whats wrong with me!!! Nobody seems to believe me and its really upsetting. I should be happy its not serious but id really like a diagnosis!!!!

  • withoutabix

    I’ve been dealing with illness for a couple of years, and while diagnosis and treatment of IBS and Vitamin D deficiency have improved things greatly, I’m starting to have new problems and there’s a problem or two that never got solved. I still get these hot flushes on and off and my heart rate goes up, to the point that it keeps me awake at night. It’s worst at night, tends to occur more often and comes and goes more rapidly. Also I’m always thirsty and keep needing to get up to pee at night. Been tested a few times for diabetes and it’s negative, and my doctor didn’t care about the palpitations/hot flushes/sweating thing. I have a new doctor now and I’m waiting for my appointment. My new thing is this muscle tiredness/weakness. I get tired just holding my head up. My throat and jaw tire easily as I try to eat. Everything that involves moving is tiring. I keep needing to sit down and rest. My brain wants to do a billion things with my day, but my body just says “No!”. I’m only in my early 20s and I don’t know if I’ll ever finish college or have a career, as my career choice was one involving lots of physical movement. I’m at a stage where I’m used to trying to cope with chronic illness responsibly, and the emotional ups and downs that come with it, but if the worst happened and I had to remain unemployed at least if I had a name for it I could make decisions based on more solid information. This hanging about in limbo makes me mad.

  • hercules25

    Most people that have fibroid dont notice them but they dont make you sick. I had a baseball size one.

  • hercules25

    Has anyone here ever been tested by Igenex for Lyme Disease and co
    infections. I say Igenex because local labs like Lab Corp/Quest will
    most likely show negative. They are very inaccurate test. I hear so
    many ppl talk about being undiagnosed and just like Heather I have the
    same bullshit dx of fibro, IBS, Migranes and such. After 15 years of Drs
    come to find out I have had Lyme Disease and co infections this whole
    time. If undiagnosed it will destroy your body and life. Going from Dr
    to Dr hoping for an answer everytime, I have been there. While I am in
    treatment for Lyme Disease it will takes years of treatment and the fact
    is I will live with it the rest of my life. I help run a non profit for
    Lyme Disease and I hear these stories that everyone has posted on a
    daily basis. Not saying everyone here has Lyme but if you exhausted all
    your Dr’s and test its worth a shot to test for it. But again Lab Corp,
    Mayo Clinic, and Quest have always showed my test neg due to the
    inaccuracy.

  • Heather

    You don’t have to feel alone at all, but I do understand the frustration. I am starting over with a new doctor and a long history of autoimmune symptoms and a lot of one doctor says this, the other says that, but I don’t end up getting the help I need. So, this next Thursday I get to go in an hear the results of a new set of blood tests. Will the ANA be borderline or positive this time, or heck maybe even completely normal? One never knows with my body. I’ve yet to meet up with a doctor who understands that an ANA is not the be all, end all of autoimmune diagnosis. I am afraid I will end up once again, patted on the head and encouraged to ‘walk more’ and sent on my way with nothing to help end …this endless pain. I’ve been diagnosed with Fibro, Migraines, HBP,Dry Eye, GERD, IBS, and 2 years ago a ‘soft diagnosis’ of Scleroderma – yet despite having surgery to open strictures in my esophagus and medication for an esophageal ulcer, fatigue, skin changes, joint pain, etc….the closest rheumotologist refused to take me on. My two half-sisters were both diagnosed with Lupus early on (I didn’t meet them until we were all grown and had no idea they’d suffered like I have.)….I admit to being ‘envious’ of their firm diagnosis. When will it happen for me? Is it the difference in states and medical care? I live in a depressive area where a lot of doctors still think most women’s complaints can be blamed on pms and depression. You know what makes me depressed…going to bed every night knowing I’m going to wake up with the same pain, the same exhaustion, the same limitations and disappoint friends and family when I simply can’t go out the way they want me too…and no one seems interested in helping me fix that………Hope you’ve had some good medical care since you posted this….It would certainly give other people like us much needed hope.

  • Amber Phillis

    My doctor never had a clue what was going on with me. They stuck me on different medications guessing that it would help me but they never did a THING!

    A friend recommended Dr. Ben Gonzalez in silver spring, MD and he found out that I had a fibroid the size of a grapefruit! No other doctor even got close!

    He wrote an article about what happens when doctors don’t know whats wrong.

    http://www.atlantismedcenter.com/blog/everything-is-normal/

    Might help you a little:o)

  • Nori Shaker

    Do you made stool test for intestinal protozoa by PCR method not traditional
    method that used at all Hospitals Labs? there is one or two Lab. using
    this test I can’t located here but if wish this is my email:
    majabomustafa(at)yahoo.com
    Most digestive disorders in patients are due to some protozoa in the intestine
    doctors not believe is a harm!!!!!!

  • Nori Shaker

    please let me know your symptoms and progress with little words.

  • Jill

    I suffered my whole life with undiagnosed seizures (which I
    would get almost 3 times a week), muscle spasms and cramping (to the point
    where I couldn’t walk some days and at one point they though I had MS), fatigue, hives, migraines, chronic constipation, stomach cramps.

    After 26 years of my life suffering with a multitude of undiagnosed chronic symptoms I finally had a dr. suggest a food allergy test.

    I did a blood test which outlined all my food reactions, I saw a nutritionist who suggested an elimination diet. I fasted and just stopped eating everything I had even a slight reaction to, within a month ALLL of my symptoms were gone NO MORE SEIZURES! Then I slowly began introducing things 1 at a time to figure out what caused what symptoms in my body. Come to find out GARLIC (which is in almost EVERYTHING) gives me seizures within an hour after eating it. Due to the amount of garlic I consumed on a regular basis it stayed in my blood stream and I was essentially poisoning myself, causing my body to react as if I had an autoimmune disease.

    I recommend a full allergy and sensitivity screen to anyone and everyone especially those of us suffering from chronic undiagnosed symptoms.

  • vince

    I did all the blod work seen bunch of doctors I have jaw pain amf sweling on the left side after I got some dental work done and than I got tonsilitus after that my whole life chanched it onley got worse my left side of the body gave out for 2 months I could not muve I was in the er 4 times a week all thay did was feed me pils to the point my stomach went bad sense than my billyrubin has been going up its at 4.0 now I feel si k to my stomach now the pain went into my right leg I coant walk never had pain in my legs and all kind of other symptoms my lymph notes ate Hard and swolen on left side I got no apetite and list goes on 6 months ogo I was fine now I feel like I am gona get a anyurisam or a hertatack aney minute ,the doctors suck ,just wona give me antidepresents amf when I tell tham look this is seolen or my teeth ache thay just blow it away and say u look normal I lost my job. my friends think I am a hayprocondriact and thay know who I yusto be Hard worker and a good pearson enithing thay nided I was thare now nobody beleves me because thare is no diognoses I cry every day just wona feel alive again this thing is kiling me i am going to mayoclinic inon 26 last dich effort to find a answer ,has anibody been to mayo ate thay healpful with misterry health isies

  • vince

    This sucks tje worst thing is not knowing whats wrong and having a fealing I might die aney minute

  • hope

    This sounds like my story with the exception of the doctors labeling me as attention seeking. I am slowly wasting away, unable to eat like a normal person. I would love an objective opinion.

  • hercules25

    Has anyone here been checked for Lyme Disease and Co infection (other infections given by ticks). I was given 4 Lyme test over 15 years and was told they were all negative. Finally I learned about Lyme Literate Dr’s and went to see one and he sent my Lyme test to a Lab in CA called Igenix, they are known to be the most accurate Lyme testing lab out there. BAM. I have Lyme and Bartonella I suffer gastro, neuro, and many many other symptoms. While I was started in treatment and am seeing slow improvements Lyme disease is very hard to rid of after spending so long undiagnosed. I would encourage anyone that has not been diagnosed to get a Lyme blood test sent to Igenex Lab dont let your Dr convince you that Lyme does not exist or that the local lab can test accurately. ALL NOT TRUE. Not only do I suffer from Lyme I also run a Lyme non profit and deal with patients on a daily basis that have given me their stories and theirs and mine are like so many I read on here. I am not here to say everyone has Lyme but please please get the proper test from the proper lab and rule it out. Please feel free to ask me questions.

    http://www.ilads.org/lyme_disease/about_lyme.html

  • Kerry Treece

    I know how you feel and its only my 4yr sick…..neurological disorders is what I’ve had and I find the old parts of myself scattered on the floor and I try to be that person once again and I can’t……I can’t be free myself……I have lost many friends and regret many reactions that cannot be taken back……I am lost as most of you are….I sit on the couch till my friends call up and each day they get less ans less…..I feel your pain my friends but look up and see the beauty in the world anf the stars at night and believe someday the world will be whole once again and all will be still

    My condolences to all
    -KMT

  • frazzledj

    29 years, still no diagnosis, terrible treatment at the hands of the medical disease industry and inclement poverty… hang in there.

  • bruce innewyork

    Marilyn,
    What do you do for the ringing in your ears? This symptom has become pretty bad for me. Just curious. Take good care,
    Bruce

  • m

    i mean sounds like ….lol

  • m

    again ringing in the ears ,ibs,brain fog ,dizziness ,fatigue
    are typical sounds of Candida overgrowth
    You may want to look at that
    Doctors dont care about Candida at all and it ruins quality of life big time

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