Discussions By Condition: I cannot get a diagnosis.

Please share your story

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: LaurLaw
  • May 6, 2007
  • 00:50 PM

I read thread after thread of people who are in search of answers or waited a very long time to receive them.

Currently I'm trying to write a book. This book is by no means a medical book but more about inspiration and hope. We personally have been down this road with my husband's own medical conditions. It pains me to see how callously the medical field suggests that the symptoms could be "All in your head." Conversion reaction is overdiagnosed. Doctors forget the guilt and depression they are causing when medically they can not find the answers so they assume it's all in your head. The good news is that I have found enough statistical and practical research to show that most patients actually have a medical disorder.

I'm looking for people willing to share their stories. Whether you are still on the long and frustrating road to a diagnosis or you have finally arrived at a better place and you want to share your encouragement with others. You do not have to expose your name if you don't want. I can go into the legalities of it one on one. I'm first looking for those who would like to inspire some hope. :D

The opening query to the book is as follows:

This book is an exploration of the trials and tribulations that patients must endure at the mercy of the medical community. Thousands of patients go undiagnosed every year. Many wait decades to find answers. The process is both degrading and humiliating. An alarming number of these patients will be told that “it’s all in their head” at some point in time. That the problem is their fault. The guilt and depression that is endured is merciless. Yet, over time, most patients receive a diagnosis. Only to find out they are not crazy. This book is set to be an inspiration to those still waiting for their answers.

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18 Replies:

  • LaurLaw...my name is mommy cat there is something very big going on here too many peopletoo many similar symptomstoo many undiagnosed fortoo many yearstoo many accused of psych problemstoo many coined "Hypochondriacs"too many age rangestoo many socio-economic rangestoo many statestoo many countries I am a nurseI am scaredI am a sick little girlI am afraid for my family who has symptoms tooI am noticing too many coincidences I am taking action...to the best of my ability Everyone is sickNoone can get diagnosedEveryone has same/similar symptomsNoone can figure any of this out??? Well, a little 'ol pee-on LPN from Upstate NY just put all the pieces of the puzzle together glad to help in anyway I can Lots of people...you may have to change the topic of that book or incorporate this disease with it pain...suffering...fear...anxiety...depression...anger....rage....grief....frustration... and the list goes on and on I'm here...mommy cat see below...look around site...you'll get the picture
    mommy cat 1654 Replies Flag this Response
  • Albany...mommy catI've so far heard from NY,PA,CA,WA,OH,MD,MA,WV,Fl and even Austrialia, United Kingdom and SpainKnow thisIn the 80's there was an ME outbreakwhat did they do with those people? they weren't quarantinedyet they had a contagious communicable disease spread as easily as the common coldA Pediatrician in Upstate NY documented cases of children in the 80's when outbreak occuredLos Angeles also documented their casesMontel Williams did a show on Tuesday regarding a "sudden surge" of Fibromyalgia in LosAngelesI asked my doc if Fibromyalgia could, in fact, just be a mild form of Myalgic Encephalomyelitis...see the connection? I'm a nurse, I didme, my cousin, sister in law and her sister all have ME symptoms to varying degrees...mine being the worstmy mother, my cousin's mother and sister in laws mother all previously diagnosed with FibromyalgiaSo, you see...location had nothing to do with it...this is PandemicPlease keep in touch...I will even give you my phone number if you would like to talkI feel like a "One Woman Band on World Tour" right nowneed support from others if we are going to do something about thisIt's time...I'm rallying the troops...let's go!!!!!!!!!!!!!! mommy cathttp://forums.wrongdiagnosis.com/images/misc/progress.gif
    mommy cat 1654 Replies Flag this Response
  • Hi LaurLaw,I would be very happy to offer my personal stories for something like this, but I'm not sure how to do so. I've been told that it was in my head when I had a parasite, when my thyroid was growing several things, when my cervical spine between c-5 and c-6 were causing my arms and hands to not work well, and I was even told by the trauma center after I was in a major car accident, that I *could* move my left side if I wanted to, and I was only trying to "build my case" so I could get money.I have been mistreated, humiliated, and ignored, yet every time, it has turned out that eventually doctors figured out that I needed a particular medicine, or a surgery, (or two), or special therapy. EVERY time, I have eventually been able to prove that I was not being a psych case, just a hard-to-diagnose medical case.My own opinion is that when doctors can't figure out what is wrong with you, it is easier on some of their egos to say that it is in our heads, than admit that they are stumped. Luckily, through all of this, my regular family physician has always believed me, and stuck with me, even when he couldn't figure it out himself, and has been willing to do tests, send me to specialists, and generally do whatever is necessary to help me get help.I think a book on this issue, like what you described here, would be a very important thing.Perhaps you could start a website or something, where people could contact you?Best,Shula
    Anonymous 42789 Replies Flag this Response
  • Hello Original Poster-I was wondering if you are familiar with NAET, Deb Shapiro, Raymond Francis, and Louise Hay. If not, what authors are you reflecting on or using as material to support for thesis?Often doctors seem to have blinders on, but in reality they would be better off accepting that two people can't never be sick in the same way.The human body is not a machine, it is more like a garden- and it takes a while to figure out what's going on underground.Not all doctors are equally trained- and the fact that they study so much does not mean that they are ready to be strong for others. People who sacrifice to become doctors are not given all the training but they still expose themselves to so much stress and suffering for what they find to be their vocation in life. There is no perfect formula for every medical case.Going to the doctor is not like taking the car to the car dealer. Doctor did not create the human body- only the approaches to treat it.Being sick is ultimately neither good or bad- but it serves a purpose.Take care you all!
    Eatafruit78 960 Replies Flag this Response
  • Dear Shula,Do you have a nodular thyroid?have you had previous parasite infection?unable to move arms/hands?"selective" L sided weaknes? LOLmany docs?many meds?many tests?many surgeries?many specialists?many times defending yourself from being a psych case? Do you think you are the only one???I'm trying to tell you that the majority of people on this website, including me and you are suffering from symptoms of ME Yours are all theremine are all thereare you really the only person who doesn't see all of this?Even Curly Stooge is giving me great adviceHe sees it too and he's a million miles away I'm sure they've ruled out every other diagnosis under the sun with you...they have with me too...and with all of the other lost souls in this forum looking for answers I can only help those who are willing to listen Be Well and God Bless You too....mommy cat
    mommy cat 1654 Replies Flag this Response
  • Fruity...Keep in coming...you are great at sharing what you know there are many people here who will need this advice...once they all figure it out Thanks...not everyone shares like you...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Yours are all thereare you really the only person who doesn't see all of this?I'm sure they've ruled out every other diagnosis under the sun with you...they have with me too...and with all of the other lost souls in this forum looking for answers mommy cat, please help others, but not me.My thyroid was growing five different kinds of cells. They removed the nodules and my thyroid, and that was all better. It was years ago...no problems in that area since.I got the parasite in the Philippines, and one round of ten days of Flagyl got rid of it. Took a year or so to heal from the damage the parasite caused (because it took so long to diagnose.) That was years ago. No problems in that area since.I have a genetic degenerative connective tissue disorder, and my cervical spine at c5-6 had collapsed, and was growing a bone spur. This was shutting off my nerves to my arms/hands, both sides. I had cervical spine surgery which took out my destroyed disc, cut off the bone spur, which went all the way around the vertebra (like the lip of a cup), and put in a spacer. After I got better from the surgery, I was nearly completely improved. You could only tell there was a problem when I did calligraphy, and even then only a calligraphy expert could tell that my ability was very slightly diminished.I got the left side weakness from being hit by an SUV on my left side. Mommy cat, when your only tool is a hammer, everything starts to look like a nail. I am not saying anything bad about ME. I am just saying that medical science is so much more complex than a single diagnosis.I am not a "lost soul" and they have not "ruled out every diagnosis..." they have well diagnosed me. It just took a long time, and only after some doctors gave up and told me it was psychological. That was my point: even though there have been doctors all along the way that nay-sayed, for EVERY problem I have faced, there have finally been doctors who have helped me.All my answers have been found. Now I post on this board to try to help others find theirs.Shula
    Anonymous 42789 Replies Flag this Response
  • others have found their answers too...but are they correct?? A girl from Pennsylvania was on this site looking for Lupus information I sent her ME site info...she cried...this was the info she and her doc had been looking for, for the past 10 years...just like you and me Everyone always has reasons for their symptomsI always "chalked mine up to something else" Others have been ill for "years"...just like you and me I understand that you are annoyed with me after all, nothing I say here has any merit...yet I'm hearing from people from everywhere...everyday Read around the site, Shula...the picture will begin to get crystal clear I'm not saying everyone has ME...just a lot of coincidencesso many peopleso many similar symptomsso many yearsso many docsso many testso many wrong diagnosis(s)so many states heard fromso many age groupsso many people accused of psych problems I'm just saying theres a very common thread...I'm not paranoid...just a sick little girl trying to help myself and all of the others here with ME symptoms I wish you only well...PLEASE don't let your annoyance with me stop you from visiting www.ahummingbirdsguide.com God Bless, Shula...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Spam is a bad thing. I report spam.Shula
    Anonymous 42789 Replies Flag this Response
  • I am not a "lost soul" (...)All my answers have been found. ShulaI agree with you Shula, 100%- No one is in the position to judge the answer that you have accepted to be the right answer for you.There is nothing like a "Lost Soul"- but one might feel lost when relying on others to get validation.
    Eatafruit78 960 Replies Flag this Response
  • Mommycat, you were a nurse - you obviously must realize there are other conditions besides ME. yikes, I used to like coming here to help people, but I can't read your posts anymore - no matter what a person has - constipation, dry eyes, itchy scalp,. etc. you tell then they have ME. Get a handle on this - I think you're bordering and on the edge of a mental diagnosis yourself (and I say this as someone with a master's in mental health counseling). And, I think you could be hurting a lot of people who have other diagnoses, but through your cheerleading, and medical credibility are delaying in getting the correct diagnosis. If I saw just one post from you suggesting some other diagnosis than ME you might improve your credibility some - instead it's just spam - I am starting to wonder if you're not the owner of the hummingbird site and are trying to increase visitors in order to sell advertising.
    Anonymous 42789 Replies Flag this Response
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  • There is a difference between sending several people garbage...and sending people information on a disease that appears to be Pandemic at this time...and fits their symptom criteria Shula...Denial is not a river in Egypt I have to go...there are people who need my "spam" mommy cat
    mommy cat 1654 Replies Flag this Response
  • There is a difference between sending several people garbage...and sending people information on a disease that appears to be Pandemic at this time...and fits their symptom criteria Shula...Denial is not a river in Egypt I have to go...there are people who need my "spam" mommy catYou can't harass people here in an attempt to help them. You are starting to sound like a cult leader: trying to control the environment in order to find relief from the internal chaos.
    Eatafruit78 960 Replies Flag this Response
  • fauve...forgive my fervor This is happening...I've heard from people in several statesEven other countries all so sickno diagnosi?all similar symptoms sorry I'm offending you...if your symptoms fit...you would be glad someone responded with something that was actually possible There are many other conditions, other than MELupusFibromyalgiaRestless Leg SyndromeIncrease in AutismMultiple SclerosisChronic FatiguePost viral fatigue syndrome and the list goes on the thing that will really get your noggin' going is when you realize people are misdiagnosed every day worldwide, with the above diseases...are they correct where do all of these things come from Did your great-grandfather suffer from restless leg syndrome?did your great-great aunt suffer daily from Fibromyalgia?? sorry, not intending to offend...just a lot of things coming together all at once For 34 years, my sister has suffered red nodules up and down her legs...been to countless specialists...possible rheumatoid according to them this am, after 34 years...I read it is also a symptom of MEshe has several others as well Best to you...mommy cat
    mommy cat 1654 Replies Flag this Response
  • You keep telling people to forgive this and that- but you are really chasing people away and you have no intention in stopping your behavior.This whole ME rally is a great way to bring attention and try to get some clingy followers to give you attention.What rewards do you get from being sick? What is it that was not working in your life?You are so eager to help others- but it does not seem like you are doing nothing for yourself but to hoard information.
    Eatafruit78 960 Replies Flag this Response
  • so sorry you feel that way I'm sorry that you misinterpret my wiilingness to help others as a way of personal gain I'm sorry that the best info I've found is on that site I'm sorry I ever looked for one person in the universe who might understand how I feel I'm sorry I found thousands I'm sorry there's a few of you who can't see what is going on here...right in frony of your eyes I'm sorry you feel that I'm spamming I'm sorry I'm letting you get to me I have people to help... instead of bothering me...go pass some NAET info around...all these ME patients are going to need it including myself and thank you for that info...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I've had a couple traumatic experiences in dr's offices and emergency rooms. I aquired what is looking to be a long term illness about a year and a half ago, I had little experience with Dr's and hospitals. The few I had were not inviting. At that point I had managed to keep away from the medical world for a few years, and any other medical condition I had before that time was clear but, minor, and treatable. Never before had I suffered such severe and strange symptoms. It took me a month and a half to muster the courage to go to an emergency room one afternoon when I felt as though I could not go forward. I took a deep breath before entering the building that afternoon, and told myself i was doing the right thing. For weeks I had hoped whatever was wrong with me would subside. At this point, I was sure it was something horrible like HIV, and I did not want to know. I sat in the parking lot mustering the courage to get out of the car, to walk the steps into that emergency room. When the Dr finally did see me that evening, the only test her performed was a rapid strep test. The last 5 mintues of our conversation was him talking to me about what kind of drugs I would like. He asked me if I wanted him to write me prescription, and which one. I was shocked. It occurred to me that this man had watched way too many episodes of ER, and was trying to "catch an addict". Time seemed to slow. I wsa tilting my head trying to imagine the scenerio. Maybe he though I was going to say Hyros, and then what? He's be the big hero and call the cops and have me arrested? Or would he call me names and have security lead me out? I was astonished. I told him I did not need any drugs, because quite frankly, I had no clue what was wrong with me. What I wanted was help, some direction. I then got up and left. I haven't been back to that hospital. My second worse encounter was when my OBGYN found a suspicious brown spot on my vulva, and sent me for a skin biopsi. The Dr. who did my biopsi took the wrong spot of skin. Aparently the report from the first Dr. wasn't clear enough. A third Dr. called me with the test results. None of these Dr's know me from Eve. This way of practicing medicine is sickning. I know that there are Dr. shortages, but what exaclty are we paying for here??
    Anonymous 42789 Replies Flag this Response
  • dear unregistered...countless of people on this site experiencing similar problems...many, seemingly unrelated symptoms... one of the reasons I myself could not get a diagnosis We are paying the doctors so they can pay their mortgages I've done my own searchingI came up with way more than I bargained for People are reporting me for spamming because I'm sending people with ME symptoms a link for ME information why is it, the ones reporting me are the only ones who don't see what is happening? You may want to google symptoms of Myalgic Encephalomyelitis look up chronic fatigue syndrome look up info on Parainfluenza 5 virus...it's what causes ME Look around this site on posts for a link involving hummingbirds If I send you the actual link...they will probably throw me off the forum...best to you...mommy cat
    mommy cat 1654 Replies Flag this Response
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