Where is My Diagnosis?!?

Sometimes I wish I had cancer because even if you look “healthy” people understand that your body is quite ill.  There is an understanding in society regarding cancer and it garners much more understanding and compassion.  In reality, I’m sure that just having a nice clear diagnosis would be a huge relief and a great help.  I wouldn’t run into doctor after doctor that takes one look at my epic of a medical record, asks me a few questions and then just tells me my symptoms don’t align with any disease they know.  So, why don’t we run another volley of painful and expensive tests to see if a possible answer magically appears?

This will only take a second, just hold still.

This will only take a second, just hold still.

In my case, absolutely, doctors are just practicing.  More like guessing and hoping.  There are many doctors that through their attitude or their words suggest that I am some sort of nutty hypochondriac with a long history of duping doctors.  That everything I’m experiencing is in my head or that I’m just seeking drugs or attention.  I feel like I should walk into doctor’s office with pictures of me rock climbing, skydiving, and surfing in Australia.  Prove to them that there is no way I would trade my old life for this struggle of pain, misery, and constant suspicion of the truth of my situation.

Why

Why

Would

Would

I

I

Give

Give

This

This

Up?!?!?!?!

Up?!?!?!?!

If only they realized what my life is now!  I’m in so much pain that a new day is a challenge not a gift.  My seizures are out of control and they are terrifying.  Can they even imagine what it is like to have your world go black and lose control of your own body never knowing whether it just falls dead or starts to throw my limbs around like the biggest fan in the middle of a mosh pit?  Have they tried putting themselves in my shoes?  Am I even a serious thought when I’m right in front of them? Am I a thought after I leave the office?   I don’t know if a lot of the doctors I see even care on a basic human level or if I’m just another case file.

Anyone! A diagnosis, please!

Anyone! A diagnosis, please!

While it is becoming more common for people to leave a doctors office without any clear diagnosis and we all know how much misery loves company, not knowing the actual cause of my illness adds a large burden to an already heavy load.  Not only do I experience a certain amount of discrimination from both society and the medical community, but I also struggle internally with the lack of answers to my constant questions.  What is happening to me?  Why is my body such a disaster?  Why can’t anyone help?  Will I ever find a successful treatment?  Is this my life now?  Is there any hope for improvement?  What do I do?  How am I going to survive?  It is a devastating situation.  No diagnosis means no prognosis.  I don’t even get a good guess on whether I will improve or devolve.  What does my future look like?  Do I have a future?  I just don’t know and no one can really tell me unless we suddenly find a diagnosis.  Even then, it could always be a misdiagnosis, which is an equally scary proposition.

What happens now?

What happens now?

I have lived with this unknown illness for seven years now and had no choice but to find a way to cope.  I remember the first two years, all the fear, the anger, and the tears.  Oh so many tears.  I remember going to new doctors who often seemed confident that with this test or that one they would find a result and treat it.  Life would get better.  I remember the hope, oh how I would hope, even while whatever the possible diagnosis was terrifying.  It meant an end to this nightmare roller coaster I was strapped into against my will.  It meant knowing.  I think that human nature struggles to always find the answers.  Our psyche rails against a problem with no solution.  A part of me has accepted that there may never be an answer.  That science and medicine just don’t understand the human body well enough to determine the failure in my body.  Now when a doctor believes he has a diagnosis and just needs to run a few tests I tend to give the idea a mental shrug.  For many years now the result they were expecting to be abnormal was fine and some other random one was not.  They scratch their heads, shrug their shoulders, and this life, as I know it, continues its many cycles.  I know that if I clung to the idea that this time we would figure it out, another failed diagnosis would be crushing.  Hope is a dangerous thing.   If you let it get too high the fall is equally long.

I don't know, it could all be in your head.

I don’t know, it could all be in your head.

Maybe someday I will get my diagnosis, or maybe I won’t.  What I have to do is find a way to cope with the curve balls that my body throws my way.  Life is a balancing act of managing my symptoms and my mental state.  Some days it is a losing battle.  It is not a science, it is an art, and I’ve be waving this particular paint brush for years.  It doesn’t make it an easier thing to live with, but in a strange way I know what to expect, or at least how to manage it.  I do my best given the tools that I have, but one tool seems to be missing—my diagnosis.

Life...as I know it.

I’ve totally got this…some days.

I get through my days like an alcoholic; one day at a time.  Some days it is more like one hour or minute at a time.  Looking any further can be very quickly overwhelming which creates a downward spiral that is almost impossible to stop.  Better to just take the tiny steps and hope to stay standing just a little longer.

just-take-one-step-at-a-timeI try every day to do the right things.  To eat right, to get what exercise I can, if I can, to get sleep and keep a regular schedule, to always take my meds and manage my body the best that I can.  Sometimes it helps and I can keep balanced, other times it doesn’t seem to matter what I do, everything just falls apart.  Ultimately, I really don’t have much control over the situation.  My body drives the car and I’m just along for the ride.  I miss the life where I was in control and my body was an after thought.  I never really thought about what would happen if I lost my health, but now that I have I’m envious of those that still live in blissful ignorance of how far life can fall when their health does.

If only the ride was this good.

If only the ride was this good.

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About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anxiety, cancer, Chronic Illness, Chronic Pain, conditions and diseases, coping, cultural differences, depression, Doctors, health, helping, ilness, invisible illness, Medicine, mystery diagnosis, Mystery Illness, pain management, practicing medicine, understanding and tagged , , , , , , , , , , , , , . Bookmark the permalink.

14 Responses to Where is My Diagnosis?!?

  1. Amanda Matos says:

    Wow. I wrote a post, today, for my non-Fibro family and friends, which is eerily similar to what you wrote. I’m 37, and I’ve battled this since age 15, at least. I’ve been a “go getter” and a “fighter” for my entire life. I’ve even fought my doctor to file for disability for almost seven years. In May, I could not fight him any longer. I’m on “short-term” disability right now, pending permanent. I’m an extremely educated person with a brain that now can’t process very quickly, loses track of what I’m saying mid-sentence, and jumbling my words at an embarrassing rate. I’ve lost my ability to teach, which was not just a career, but also a passion. I’ve been depressed to the point of numbness;, so there are not often tears, but also no laughter. I can empathize with your 12.24.13 post more than anything else that I’ve read, and I’m well-versed in these things. Your post is so reflective of my experience, that I could’ve composed it, myself.

    • leitis23 says:

      Thank you, Amanda, for sharing your experience. When I read your comment, you are absolutely right, I feel like I wrote it myself. I’m only two years younger than you and though I have been fighting my health in one way or another since I was a child it wasn’t until the last 7 years that my body has owned me rather than the other way around. I refused disability too, for many years. I’m in the process of applying now because of how my life has fallen apart. If you read “Enjoy the Silence” you’ll get more details and also how I feel about not working. I fought like crazy to keep my job because I knew the mental stimulation and the feeling of contributing to society were partially holding me together even as it physically tore me apart. I have a mind that needs constant simulation and yet can’t think straight. I mean, really, we seem like mirror images. Have you found that doctors have fallen from grace for you? If they were ever there in the first place that is. They try their one or two ideas out and when they can’t find an answer they kind of usher you out of the office saying “it’s in your head” or something to that effect? Do you find it hard to find understanding from people who are healthy? Not that they don’t want to understand or don’t care, just that it seems like they really can’t grasp what being sick is like. Most specifically how far out of your control everything is? Well, if you feel willing to share the post you are speaking of I would love to read it. Otherwise, I appreciate the input, it is always nice to know you are in good company.

  2. Marie says:

    I have tears running down my cheeks as I’m reading your history with pain. I am going on 7 years myself. So many things you have said resonate with me. I have people always suggesting doctors to me, and my 1st visit to the doctors office is always bittersweet. I am always hoping for the miracle but always disappointed. I have dealt with chronic neck pain and it has taken over every aspect of my life. I would give ANYTHING to have 24 hours pain free to spend with my family. The tears for me no longer come either. I used to cry with every disappointment. Today I we just released from a dry needling therapy which did not work. I wanted to cry but I thought why bother. I have to stay strong. I have to rely on support from others like me. And I find it insulting that anyone should think this is in our head. I didn’t choose this path, it chose me. I send healing thoughts your way and hope to keep in touch.

    • leitis23 says:

      Marie, I can relate to everything you said. Though I honestly don’t think we would know what to do with a pain free day. It has been so long that I don’t even remember what that was like. I’m not trying to make a point, I really don’t remember what good health felt like and I would have no idea what to do with myself. I think I’d be afraid to move because something would surely make the pain come back. The other concept you touched on, which is and will be a post in itself, is hope. I don’t know about you but when this all started I believed the doctors and my friends and family–a diagnosis just needed to be found and they would have a treatment that would make everything go back to normal. A pill, a surgery, a series of jumping jacks facing north, whatever it took, we would find it, do it, and life would go back to normal. I always had renewed hope with each doctor that seemed confident that his tests would determine the problem and thereby and solution I had unmitigated hope. Each time they failed I was devastated. I figured out that hope was the cause of the highs and lows and decided to get off that ride. Now a doctor tells me they feel strongly I have “x” and they just need to do test “y” to prove it, I hear the whole thing as if it were for someone else. Chances are this doctor will fail like all the rest. Hope is a dangerous thing and I have learned to avoid it. I am also fully aware how sad that sounds, but it is a realistic approach…unfortunately. We have to find hope elsewhere, in our loved ones and in the little things that make us smile. Thank you for your comment and brave sharing. I appreciate it more than you know. Please do keep in touch

  3. Cipro Victim says:

    I’ve been dealing with my “Fibro” for a year now. I am 35. I’ve put the pieces together. For me, I took Cipro and suddenly I got Fibro. I hate Drs. and I can sooo relate to your article. The only difference is I’ve been doing this for a year (which feels like 20) and you’ve been doing this for much longer. Hats off to you. Being a survivor is hard work and so tiresome. Hang in there. Thanks for the article!

    • leitis23 says:

      Suzanne, Thank you for taking the time to read the article and especially to comment. I’m no fan of doctors either, though I do go through a lot of effort to find the right one. When I first got sick I was afraid to get second and third opinions because I didn’t want to offend my current doctor. Little did I know that in my politeness I was robbing myself of the best possible care. After going through three pain specialists I found such an incredible doctor that I changed my tactics there and then. The pain specialist I found took the time to talk to me, to explain the ins and outs of dealing with doctors, surgeries, and hospitals. I still live by his four rules. 1. Always bring someone with you to your doctors appointments because either you are sick or with specialist you could get some bad news that will effect your memory. Having a friend, partner, or parent there gives you a second set of ears so you don’t miss any information and between the two of you you help yourself by ensuring you have all the information possible plus two perspectives. 2. Always get a copy of all your medical records. Doctors don’t tell you everything they note, it can assist in understanding the doctor’s thinking and maybe they missed something. It is also a good place to get questions later. Finally, having a copy of your own medical record will come in handy in ways you can’t foresee. 3. Always have someone stay with you at the hospital. These days there are too many patients too few nurses and even fewer doctors. There is an immense amount of paper work for any little task the medical staff performs. Unfortunately, this means two problems for the person in the hospital bed. First getting assistance or attention can take an act of God. You can push your help button and maybe in an hour or two someone will stop by. They aren’t being mean, they are drastically understaffed. So have someone there so if there is an urgent matter they can physically go find a nurse. Also with a loved one in the room they can pay attention to what is going on, because if you have been hospitalized you are out of it. They can catch any errors, help you with what they can, and make a ruckus to get you what you need. 4. When faced with a difficult treatment decision ask your doctor, “If I was your wife/child/friend what would you do?” This often pulls them out of medical jargon and gets you a more honest answer. It’s a good trick, trust me.

      Surviving is hard work, hats off to you too, the first two years of this were the hardest for me because my old life was still so very tangible. I suffered a lot of grief and loss, like the person I was had died and I was stuck with this lesser body. So hold on, there will be good days and bad days whether you have been doing it a month or a decade. Thanks for your thoughts, please visit again and tell me your thoughts. We are not alone, it just feels that way sometimes. Someone who understands makes a world of difference. Feel free to contact me anytime.

  4. Nanci says:

    I have had Fibromyalgia for 10 years and was diagnosed in the first year. But the diagnosis really was just the beginning of my hell. First there is no “cure” anyway. And there are still doctors in this day and age that don’t even believe in the diagnosis. And I think if I got Cancer I wouldn’t find out about it until it was stage 4, because any symptoms I bring up to a doctor are lumped into my Fibro diagnosis. Then this year I was diagnosed with Autoimmune Hashimotos Thyroid as if one chronic syndrome wasn’t enough for me to deal with. I was a go getter too. I was a flight attendant, I traveled the world at the same time running a small business on the side. I skydived, bungee jumped, surfed, loved roller coasters and adrenaline. I thank God that I did all that stuff because now I can’t even go on a kiddie ride or even stay awake for an action-adventure movie! I have been to every type of doctor, tried a ton of meds and supplements, acupuncture, chiropractor, holistic doctors, psychiatrist, Chinese medicine, functional medicine and all that has happened is that my wallet is empty…and my hope eroded. I’m only 47 so I try to push forward but I don’t have a job and I feel like such a burden to my family. Sometimes I feel like I’m just living a provisional existence…..ostensibly dead but perversely still alive. My life has shrunk to the size of my bed. I’m so over it. Thanks for sharing your story and I will pray for healing for all of us.

  5. As a professional helping patients with pain of “undiagnosed origin”, I hear concerns like this all of the time. The problem as I see it is truly a lack of understanding of the human system as a whole, and close-mindedness of many medical practitioners. In so many cases, the first line of treatment is pain medication, which is at best only palliative. In many cases, the solution to the problem does not lie with medications, is multi-factorial so requires several medical people to agree on treatment, and is also not something covered by insurance. In my experience, the lack of insurance reimbursement for the patient is one of the biggest reasons there is no follow through with recommended treatment, as it can be expensive.
    I don’t know what your specific symptoms are…and I don’t know if you HAVE been given a diagnosis…but understand that our whole body is connected from top of your head to tip of your toe. Sometimes the culprit, or one of the culprits, can be a part of you that is unexpected. I’ve attached a link to a video made by a colleague of mine to describe how this might work…and although I am fully aware that telling you this may sound like snake-oil salesmanship…I can tell you from years of experience that I (or my colleagues around the world) can often help where others can’t. Here’s the video…I think it’s worth your 9.5 minutes to watch. I wish you the best of luck in finding a solution. http://www.youtube.com/watch?v=VJZTf-F04-8

    • leitis23 says:

      I don’t have one diagnosis to rule them all so to speak. My issues are basically symptoms and they are treated separately mostly because of how our medical system is set up…the neurologist won’t comment on the organ issues, the pain specialist won’t go near the seizures and so on so that I have many doctors treating their one specialty. I believe what I have is systemic, probably an autoimmune disease which are hugely under diagnosed. I went to Mayo and they had the system you are talking about, you saw the many specialized doctors, but they met and together came to diagnosis.

  6. Linda Wainwright says:

    Just another thought (I wrote under your “story” about getting a Melisa test)…..have you looked into Lyme disease? Unfortunately, the tests for it are notoriously inaccurate so that you can test negative and still have Lyme Disease. At this point the best place to be tested is Igenix (on web). I would be particularly suspicious in that you became sick after spending that year in Australia. I know of at least one other person who picked up Lyme Disease (along with a host of other tick-bourne infections) while studying in Australia.

  7. leitis23 says:

    Linda, I have had many tests for Lyme disease come out negative, but my doctor did tell me they were unreliable and told me about Igenix. I would happily do the test except it isn’t covered by insurance so the cost is prohibitive. I didn’t even think about picking something up in Australia, that is entirely possible with the things I did that year.

    • krystyna says:

      I wonder if you have amalgam fillings in your teeth. I have been researching aches and pains for years as I, like you, cannot get anywhere with doctors. My most recent research has come up with mercury toxicity, which is a very common cause of fibromyalgia/CFS. There are some horror stories out there. I am just about to start getting my fillings removed (by a holistic dentist, as the average dentist will probably make things worse by not following protocol). Start with Alison Adams who has videos on YouTube, and also Hal Huggins who has half a century of experience.

      If you don’t have amalgams, you could still have mercury toxicity as it comes with vaccinations and other things.

  8. Heather says:

    That very fist line of this post really grabbed me. You have voiced something that enters my mind on a daily basis but that I have never said aloud. Can you imagine the derision I would receive if I said that aloud to “normal” people? That I often wish I had cancer, instead of this horrible, endless, definitely non-terminal, life-ruining illness? Or the derision I would receive even from some other sick people who perhaps are doing better than I am or have better life circumstances to pull them through (such as money, devoted spouse, reliable support network) so they don’t have the constant worry about decades of a destitute future of poverty and isolation?

    I have so much empathy for you. Thank you for sharing your experiences with an unseen audience. Your condition sounds horrible. I have never had seizures, I can’t really imagine what that’s like. But I can support you through the ether in my own small way.

    I am closing in on 7 years of painful illness. Six months before my life ended, I went paragliding for the first time. I was active, working hard, spending time with friends, looking for love … And then one day as I ran across the street, my knees hurt so bad inside — a raw, searing pain — that I almost fell over in the street.

    My whole body is affected now — feet, ankles, knees, hips, spine, neck, shoulders, elbows, wrists, hands. Even the tendons in my armpits and ribs hurt. I have extreme, non-migraine headaches (doctors don’t understand that a person who has migraines can also have headaches that are not migraines, or that someone with 30 years of migraine experience can tell the difference!), gastrointestinal pain and functional issues, endometriosis, rashes, livedo reticularis, sun sensitivity, inflammatory hair loss (I had a biopsy to prove this after hounding the dermatologist for a year because he didn’t believe me, and then I called the pathologist’s office until he finally agreed to answer my questions) … the list goes on. All of this has caused a level of exhaustion and fatigue that is itself debilitating.

    I was misdiagnosed, mistreated and ignored by all sorts of doctors for years. Seeing a doctor has become an inherently adversarial experience, as I have to constantly steel myself to stand up for myself and make my case, though sometimes now I feel too despondent to do so. I finally found a rheumatologist last December who employed a little logic (so rare!) and diagnosed me with spondyloarthritis — an earnest, sensitive doctor approximately my own age who talks to me like I might actually be a reasonably intelligent human being. To my extreme dismay, however, he has become somewhat frustrated with my lack of hoped-for response to various drugs and is starting to show the familiar doctor behaviors — selectively ignoring a huge pile of evidence, negating me — and is doubting his diagnosis. I have had myriad tests, of course, that don’t shed much light on anything. So last year’s diagnosis that first provided some hope and validation has not actually helped me much, and I find myself hoping for lymphoma more that I should probably admit (and I seriously am not minimizing lymphoma for those who have it, or any other scary cancer).

    I don’t mean to blather, I just wanted to reach out to you after reading this post (and your more recent one about grief — there is so much grief, I’m existing in a constant state of grief). I’m pretty quiet online, but personal blogs have really become an essential support for me. I am so alone, all the time. I don’t have anyone to help me with much of anything — no one is going to clean my apartment or feed me or come to the doctor’s office with me or hug me or try to cheer me up. I haven’t been able to work for years, and when my life’s savings is gone, it’s gone. I have been advised by attorneys that my case is not winnable for SS disability, partly because I have a diffuse, seronegative inflammatory illness that the judges don’t understand or respect (with no hospital stays or drug reactions that landed me in the ICU), partly because of the political climate in the SSDI office where I live, and partly because I look too good and speak too well (and, get this — because I don’t stink! Yes, I can manage to bathe myself every couple days and wield a toothbrush from time to time — I can’t possibly have a serious illness!) So when I come online and read blogs like yours, tears stream down my face, because here I am recognized, even though you don’t know me. I hope that you find support you need here as well.

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