Hi, my name is Shannon, I'm 21 years old. I have been very ill for about two years now and I have been to every doctor imaginable. They all ask me how I can live feeling so awful, yet they offer no help.
My symptoms include: severe daily headaches (I'm now on two different pain killers for that), extreme nausea and weakness, tired (I can barely get out of bed most of the time), uncontrollable sweating and flushing for no reason, weight gain, strange blood pressure (it will be extremely low, then high, then normal), chest pain, chills, anxiety, difficulty breathing even after I take my asthma medication, vision changes, abdominal pain, nosebleeds that go on forever, bloody stools and urine, unexplained sores and bruises, fainting, and just overall feeling awful.
I have been tested for Leukemia and although my white blood cell count is quite high, the doctor fluffed it off. I was recently tested for Pheochromocytoma and the tests were "inconclusive" so I suggested a MRI of the adrenal glands, again, fluffed off. I've also been tested for mono; I've been to an endocrinologist, who told me that I'm fat and need to lose weight (yet how I can exercise when I'm fainting all the time -- I don't even eat because of the pain in my stomach). I've been to a neurologist and had a MRI of the brain and he said it was normal, although I saw something in the scan that did not look normal to me. I've been tested for diabetes and Cushings Syndrome (don't have either).
I have other medical problems that are being treated: depression, anxiety, PCOS & Metabolic Syndrome (the doctor decided that I had both of those after just looking at me, no testing), severe asthma, thyroid disease, acid reflux, allergies.
I am so tired of feeling awful all the time. I spend most of the time curled up in a fetal position in my bed, crying. I've been to the emergency room several times and they tell me I have migranes -- which I don't. Migrane medicaiton doesn't work for me (I've tired over 30 different kinds). I don't know what to do anymore. I need some help and input.
Get copies of all your medical records, esp test records, and begin to look up words you don't know, and groups of symptoms as reported with the results. See if you can find something they may have missed.
Clearly you need someone to help you who is not a doctor you are seeing. Do you know a nurse who can help you look at some of these results or help you sort out which symptoms go with which body systems? An advocate who knows something about medicine would be a big help to you.
It sure does seem like an endocrinologist would be the person to help you -- so you may need a second endo opinion. If you have a university-related or medical school related hospital near you, I would contact them and see if there is someone there who can help you.
Finally -- there is a book I frequently recommend for people who are having diagnosis troubles: It's called What's Wrong With Me? The Frustrated Patient's Guide to Getting an Accurate Diagnosis by Dannheiser and Rosebaum -- and you might find some help there.
please look up chronic epstein barr, chronic fatigue syndrome, fibermyalgia, your symptoms and mine, are so very alike, I spent too much of my life with the same questions, more important though the same suffering and feeling of misunderstanding, their is alot of information available, keep the faith,
their are websites around the world, Sweden,The United States and australia have been extremly helpfull, knowing your not alone,or "crazy" is much more than half the battle. much love LTD
Thank you very much. We believe we know what's wrong with me, finally. My dopamine levels are extremely high and the rest of my catecholamine levels are strange, so we are leaning toward Pheochromocytoma. I am awaiting a MRI of my entire body to locate the tumor. I will definitely research those other diseases though. We don't know anything 100% yet.