Discussions By Condition: I cannot get a diagnosis.

desperate for a diagnosis

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: MissCMA
  • January 18, 2012
  • 08:07 PM

Like many on this forum, I have been living in agony for years without an answer. I find myself wishing for death and cursing life, unable to cope in this horrible existence. I don't want to feel that way. I met this man I want to marry and have a family with, but it's all I can do to just get through a day.
My symptoms started years ago, but what came first and how long ago has become a blur. My main complaint for a long time was vertigo. But I'll make a list. These are everyday, all day long

Vertigo and dizziness, but not a body spin, more like my actual brain is spinning
Trouble breathing, like there is a hand around my lower esophagus
Spasms in my esophagus and into my chest
Heart palpitations, heavy thumping. I am constantly aware of (and now terrified of) my heavy heartbeat
Severe joint and muscle pain, mostly in my chest, upper back, and arms (I do not believe it is Fibromyalgia)
Exhaustion
Severe physical anxiety (as opposed to thought stimulated anxiety) like my adrenal gland is on the fritz
Trouble with my vision, such as trying to, or not being able to focus and feeling like my eyes are going to pop out of my head, also hallucinating what looks like fog or a cloud rolling past me
Hot and cold sweats
skin crawling or tingling

I've had many awful sensations, such as feeling like my brain is vibrating, or what feels like an earthquake rumble across the right portion of my brain. I also constantly get this sensation that begins in my upper chest/lower esophagus that resonates up my neck and into my head that triggers the vertigo and what I call a brain quake. It's terrifying. This woke me up from sleep for the first time, which used to be my only escape. I went to the ER yesterday. Again. For like the sixth time in the past couple of years. After a CT scan, blood work that involved 4 tubes, a urinalysis, and an EKG ( the fifth in my life) of course, they told me I was fine.
I have seen dozens of doctors and specialists (I can't even remember them all), including several general practitioners, a physical therapist (to rule out positional vertigo), 2 ENT's, 3 neurologists, a gastroenterologist, a cardiologist, an allergist, a naturopath, and even a medical intuitive and acupuncturist. I have had more tests than I can remember, but lets try: full brain and spine MRI, 2 CT scans, an upper endoscopy and colonoscopy (which was for chronic hemorrhoids, but that's irrelevant), a stress echo test, I wore an event monitor for 30 days, and some test where they measured my eye movement and poured water in my ears. I know there's more, but can't think of them. A neurologist in Seattle thought I may have migraine associated vertigo. After doing some research, I disagree. It doesn't fit or feel right. I used to drink allot and smoke. I quite smoking and cut way down on drinking, thinking that was making it worse, but it makes no difference.
I now no longer have insurance. I am thousands of dollars in debt for medical bills and they just keep coming in. I almost had to file for bankruptcy due only to medical bills. Every doctor tells me I 'm fine and blows me off as having stress and anxiety. Nonsense. I know, with everything that I am, that something is wrong with me. This is not in my head and I am not crazy. I cry and wish everyday for someone to help me. Any advice would be very appreciated.

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5 Replies:

  • Hello, My name is Kelly and reading your story brings tears to my eyes. For years my daughter suffered with every single symptom on your list with along with a few more. Her story is similar and the dotors told me it was all in her head. She begged me to believe in her & to get her the help she really needed. It was a VERY long journey but we did find the correct diagnosis Chiari Malformation of the brain.They did get one thing right IT WAS IN HER HEAD!!! It is almost always misdiagnosed on 01/26/12 she had decompression of the brain surgery and today she is symptom free. I do relize it is still early post op but to date she has not had one.Go to the Chiari Institute in NY web site and look for Doc.B where the Doctors list is. You can email him a list of your symptoms and he will respond to you with in 24hrs I can't say this is what you have but I hope you find the answers you need. Best Wishes, Kelly.
    kellychiari 2 Replies
    • February 8, 2012
    • 00:09 AM
    • 0
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  • Your symptoms are terrible and I am so sorry to hear all this! I have replied to three different posts with the same information. Your symptoms could be related to celiacs disease or severe gluten intolerance which can cause all these symptoms. The one thing to note is that your chest issues could be being caused by your increased anxiety which causes very real symptoms. Once anxiety starts, it is a never ending spiral downwards and it feeds on itself. I have been there in that boat and it took me years to conquer-you may want to start with an anti anxiety med that is non addictive like Proponal. That said, your symptoms correlate with inflammation and if like me all your major tests are negative, it may be environmental or what you injest. Knock out all gluten-eat protein, fresh vegetables and fruits. Do not eat processed food, grains or anything derived from grains. You may also want to try eliminating dairy as many people who are sensitive to gluten are dairy intolerant which causes other problems. The other thing to think about is whether you may have Lyme's. I live in Ca. near one of the specialists in the country and have met countless people who have had Lyme's and gotten treated properly and resume normal lives after being debilitated. What you do know is that you can not rely on standard doctors to tell you what is up!
    phadfield 4 Replies
    • February 18, 2012
    • 03:43 AM
    • 0
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  • Do you have a low ferritin level? Has this ever been checked? You are describing symptoms of severe anemia. However, it can take years before it shows up in a normal blood test (and yet, you WILL feel like ****). If you have something like coeliac, then low ferritin levels are very likely. Don't assume a Doctor would have prescribed this particular blood test either (trust me on that, I have been through my own personal ****). Anemia rarely comes alone, it's usually a sign of some other underlying problems. If you don't know your ferritin levels, it couldn't hurt to get them measured, it's a simple blood test.
    geenie 39 Replies
    • February 24, 2012
    • 04:18 PM
    • 0
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  • I would ask my doctor to refer me to a neurologist and inquire as to wheter or not you may have chiari malformation.Like many on this forum, I have been living in agony for years without an answer. I find myself wishing for death and cursing life, unable to cope in this horrible existence. I don't want to feel that way. I met this man I want to marry and have a family with, but it's all I can do to just get through a day. My symptoms started years ago, but what came first and how long ago has become a blur. My main complaint for a long time was vertigo. But I'll make a list. These are everyday, all day longVertigo and dizziness, but not a body spin, more like my actual brain is spinning Trouble breathing, like there is a hand around my lower esophagusSpasms in my esophagus and into my chestHeart palpitations, heavy thumping. I am constantly aware of (and now terrified of) my heavy heartbeatSevere joint and muscle pain, mostly in my chest, upper back, and arms (I do not believe it is Fibromyalgia)ExhaustionSevere physical anxiety (as opposed to thought stimulated anxiety) like my adrenal gland is on the fritzTrouble with my vision, such as trying to, or not being able to focus and feeling like my eyes are going to pop out of my head, also hallucinating what looks like fog or a cloud rolling past meHot and cold sweatsskin crawling or tingling I've had many awful sensations, such as feeling like my brain is vibrating, or what feels like an earthquake rumble across the right portion of my brain. I also constantly get this sensation that begins in my upper chest/lower esophagus that resonates up my neck and into my head that triggers the vertigo and what I call a brain quake. It's terrifying. This woke me up from sleep for the first time, which used to be my only escape. I went to the ER yesterday. Again. For like the sixth time in the past couple of years. After a CT scan, blood work that involved 4 tubes, a urinalysis, and an EKG ( the fifth in my life) of course, they told me I was fine. I have seen dozens of doctors and specialists (I can't even remember them all), including several general practitioners, a physical therapist (to rule out positional vertigo), 2 ENT's, 3 neurologists, a gastroenterologist, a cardiologist, an allergist, a naturopath, and even a medical intuitive and acupuncturist. I have had more tests than I can remember, but lets try: full brain and spine MRI, 2 CT scans, an upper endoscopy and colonoscopy (which was for chronic hemorrhoids, but that's irrelevant), a stress echo test, I wore an event monitor for 30 days, and some test where they measured my eye movement and poured water in my ears. I know there's more, but can't think of them. A neurologist in Seattle thought I may have migraine associated vertigo. After doing some research, I disagree. It doesn't fit or feel right. I used to drink allot and smoke. I quite smoking and cut way down on drinking, thinking that was making it worse, but it makes no difference. I now no longer have insurance. I am thousands of dollars in debt for medical bills and they just keep coming in. I almost had to file for bankruptcy due only to medical bills. Every doctor tells me I 'm fine and blows me off as having stress and anxiety. Nonsense. I know, with everything that I am, that something is wrong with me. This is not in my head and I am not crazy. I cry and wish everyday for someone to help me. Any advice would be very appreciated.
    Patsyann 1 Replies
    • February 24, 2012
    • 10:04 PM
    • 0
    Flag this Response
  • Like many on this forum, I have been living in agony for years without an answer. I find myself wishing for death and cursing life, unable to cope in this horrible existence. I don't want to feel that way. I met this man I want to marry and have a family with, but it's all I can do to just get through a day. My symptoms started years ago, but what came first and how long ago has become a blur. My main complaint for a long time was vertigo. But I'll make a list. These are everyday, all day longVertigo and dizziness, but not a body spin, more like my actual brain is spinning Trouble breathing, like there is a hand around my lower esophagusSpasms in my esophagus and into my chestHeart palpitations, heavy thumping. I am constantly aware of (and now terrified of) my heavy heartbeatSevere joint and muscle pain, mostly in my chest, upper back, and arms (I do not believe it is Fibromyalgia)ExhaustionSevere physical anxiety (as opposed to thought stimulated anxiety) like my adrenal gland is on the fritzTrouble with my vision, such as trying to, or not being able to focus and feeling like my eyes are going to pop out of my head, also hallucinating what looks like fog or a cloud rolling past meHot and cold sweatsskin crawling or tingling I've had many awful sensations, such as feeling like my brain is vibrating, or what feels like an earthquake rumble across the right portion of my brain. I also constantly get this sensation that begins in my upper chest/lower esophagus that resonates up my neck and into my head that triggers the vertigo and what I call a brain quake. It's terrifying. This woke me up from sleep for the first time, which used to be my only escape. I went to the ER yesterday. Again. For like the sixth time in the past couple of years. After a CT scan, blood work that involved 4 tubes, a urinalysis, and an EKG ( the fifth in my life) of course, they told me I was fine. I have seen dozens of doctors and specialists (I can't even remember them all), including several general practitioners, a physical therapist (to rule out positional vertigo), 2 ENT's, 3 neurologists, a gastroenterologist, a cardiologist, an allergist, a naturopath, and even a medical intuitive and acupuncturist. I have had more tests than I can remember, but lets try: full brain and spine MRI, 2 CT scans, an upper endoscopy and colonoscopy (which was for chronic hemorrhoids, but that's irrelevant), a stress echo test, I wore an event monitor for 30 days, and some test where they measured my eye movement and poured water in my ears. I know there's more, but can't think of them. A neurologist in Seattle thought I may have migraine associated vertigo. After doing some research, I disagree. It doesn't fit or feel right. I used to drink allot and smoke. I quite smoking and cut way down on drinking, thinking that was making it worse, but it makes no difference. I now no longer have insurance. I am thousands of dollars in debt for medical bills and they just keep coming in. I almost had to file for bankruptcy due only to medical bills. Every doctor tells me I 'm fine and blows me off as having stress and anxiety. Nonsense. I know, with everything that I am, that something is wrong with me. This is not in my head and I am not crazy. I cry and wish everyday for someone to help me. Any advice would be very appreciated.I am sorry to hear your suffering- I too have been on a rollercoaster ride from ****- are you taking any medication?- I found out the hard way that I was suffering from w/d from prozac (mild ) then my doctor put me on Lyrica for fibro and I hated it- it made things worse- so he weaned me off way too fast and that got the w/d symptoms snowballing- I thought I was having seizures so went to neurologist who put me on anti-seizure- BAD- Xanax_and ambien- oh if I only knew then what I know now! I had gone to the ER on several occations feeling like I was dying. Ive been off xanax for 3 weeks and trying to get off ambien- they have ruined my life and now I am on a crusade to try to keep people from making the same mistakes. If you are in w/d you may not know it. I don't know if this helps but the symptoms you have sound very similar to mine. I hope you find the answer
    Anonymous 42789 Replies
    • February 27, 2012
    • 00:54 PM
    • 0
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