Discussions By Condition: I cannot get a diagnosis.

Wrong Diagnosis? (Multiple Symptoms)

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: SusyDawn
  • August 25, 2008
  • 02:44 AM

Hi there,

I'd like to start off by saying how grateful I am for these forums, as it's an unfortunate relief to see that others are experiencing similar situations and that there are people out there who can and are willing to help.

A bit of a background -- I'm 25 and am relatively healthy and active, despite two bouts with Mono and testing positive for EBV about ten years ago. For the past few years, I've had symptoms that included extreme fatigue that last year they diagnosed was Chronic Fatigue Syndrome. I had also previously been diagnosed with depression and a panic disorder.

I'm what you would call a naturally bubbly person -- an optimist, usually full of smiles and enthusiasm. I have some stressors in my life, but none that I haven't dealt with before, and I have great relationships with my family and friends. A couple of months ago I joined a gym and was feeling great -- high levels of energy, eating right, etc. So that's who I normally am, but I've noticed many changes lately, including a variety of symptoms that don't seem to link up and that are progressively getting worse.

Three weeks ago I was playing cards with my family and suddenly felt very weak. My heart was beating fast, I felt short of breath, had pressure in my chest, and tightness in my arm. I'd had a mild case of insomnia for about two weeks prior (which is very unusual for me, given that I usually sleep too much), so I thought that I was just very fatigued from not sleeping. The next day I went to the doctors, who said that he heard a familiar clicking when he listened to my heart. I had once been diagnosed with Mitral Valve Prolapse when I was a kid, but when I was tested for it as a teenager, they said it had gone. At this doctor's suggestion, I had an echocardiogram done, but that came back as negative for the mitral valve (although they did say I had minor leakage in three valves, which is apparently normal).

So three weeks later, numerous doctors visits, and two trips to the ER and the doctors are stumped. Below I've listed many of the symptoms that I just can't seem to find the answers for. My doctor (who has even conferred with other doctors) believes I might have Cytomegalovirus -- a mono-like virus, but I went to the ER this past Friday with difficulty breathing (hyperventilation) and heart palpitations and the ER doctor claimed that it was anxiety (possibly because of my history). I can't tell you how much I don't think this is anxiety.

Symptoms:

Mild insomnia, despite constant fatigue
Chills
Feeling feverish/flushed
rapid heartbeat/fluttering -- especially upon waking or turning over
Hyperventilation -- feeling like I'm not getting enough air, resulting in deep shallow breaths
Difficulty catching breath after mild exertion (walking up stairs or even changing the sheets on the bed)
Some neausea -- no interest in food
Pain in upper right and left stomach -- underneath ribcage
Pressure across chest, with fleeting bouts of discomfort/pain
generalized weakness
body aches and pains, especially in back
stiffness in neck
some tingling in extremities, tightness/cramping in arms
feeling lightheaded
trouble concentrating, focusing (I notice this especially at work, where once I was very productive)
some pain around ovaries (ultrasound done in June)
weight gain
changes in menstrual cycle
bouts of diarrhea
change in personality (increased irritability -- I've noticed I haven't been my "bubbly" self, whether this is due to being sick, I'm not entirely sure, but increased irritability and sensitivity has been going on for a quite awhile)

The above list are the symptoms I was able to recognize within the past three weeks. Additionally, the doctor said that I had swollen lymph nodes on my neck.

The tests I've undergone have shown that my lungs are clear and my heart is otherwise healthy (echo, EKG, CT scan)
My thyroid levels are normal, as is the rest of my bloodwork, except that my sed rate was elevated and I had low potassium as of Friday.

I've taken all of this to the doctors, but they don't know what to make of it and I don't know who else to go to. I believe the next step is a specialist (I've been feeling too bad for too long) but I'm not sure where to even start. There are a few hours (and days) where I feel like I'm getting back to normal, but then other days where I just feel generally bad all over.

I appreciate in advance any advice or suggestions you can offer so that I may present it to my doctor. If there's any additional information I can provide, please let me know.

Thanks again.

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