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.


Mild insomnia, despite constant fatigue
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.

Reply Flag this Discussion

6 Replies:

  • Celiac disease? Tr here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1263 Replies
    • August 26, 2008
    • 07:22 PM
    • 0
    Flag this Response
  • An Infectious Disease Specialist should be able to confirm or rule out CMV for you. Otherwise I might see a Cardiologist even though you've had all of the routine tests. They might see something your regular doctor wouldn't. Have you had your cortisol level checked? Also did they test for B12 deficiency? You might also ask to have a routine Rheumatological Panel done to rule out auto-immune problems. Who diagnosed your CFS and anxiety/depression? How was your blood pressure when you were in the hospital? Do you take your temperature several times a day? With chills, I'd be curious if you are running a fever.They tried to peg a depression diagnosis on me too instead of looking for why I was tired. It's the new scape goat diagnosis.
    dizzy lizzie 192 Replies
    • August 26, 2008
    • 09:07 PM
    • 0
    Flag this Response
  • Ihave almost the same and the doc's blow me off. I have been feeling like my head is stuffed with cotton. MRI showed small white spot, Spinal Tap show a high Protien tht might suggest nerves are under attack but nothing for sure and that is where it ened. I have had surgery for the rapid heart rate and then a Blood clot and on coumadin and asprin. Please Stay u pon this and post any info feel like I am going to go crazy.
    Anonymous 42789 Replies
    • October 15, 2008
    • 06:33 PM
    • 0
    Flag this Response
  • I hope you take the suggestions to look deeply into Lyme Disease. Your list is very typical for Lyme and other tick borne diseases. Babesiosis can cause chills, fever, breathing problems. I just wanted to throw this idea to you. Check it out. Do your symptoms form any cyclic pattern? Try to keep a journal on your symptoms, it might help and give some better ideas. Good Luck.
    Anonymous 42789 Replies
    • October 16, 2008
    • 07:37 AM
    • 0
    Flag this Response
  • Hi Susy. What a relief it is to find other people on here with similar symptoms to me. I too have had lots and lots of tests that have all come back negative (including 3 HIV tests). My symptoms are extremely similar to yours listed and the doctors have no clue whats going on. Other symptoms I have are seeing unusual bright lights when i sneeze, tingly/numb sensation on forehead (constant) & coughing up phlegm a lot. The symptoms I've had have been on and off for about 4 years now & still no luck in finding out whats wrong. Recently they seem to have been getting worse.Any advice would be greatly appreciated. Fed up of being made to feel like an annoyance by GP's, Health Advisors etc.
    Anonymous 42789 Replies
    • October 16, 2008
    • 02:34 PM
    • 0
    Flag this Response
  • I'm was 35 years old in good health and active when I fought doctors for 4 years on these symptoms and reoccurring throat infections not Strep, and the just kept telling me it was mono. I kept going in and to no avail he would tell me the same thing and that I could feel the effects of mono a year later. I started pointing out that it was past a year and since when is low blood pressure a symptom of mono. I ended up in the ER for a cyst that may have went ceptic. With in the hour I was having chest pains and difficultly breathing. They decided to watch me for a day or two to make sure I didn't go ceptic and I didn't but my other symptoms got worse. My BP was low as usual and my oxygen was low and they were going to send me home until my friend who come to pick me up couldn't dress me because I was too weak and couldn't stay awake pointed out to the nurse that I couldn't breath etc.. Finally did tests and my Potassium was low I have low hdl (good cholestrol),hypothyroidism,low BP, hypertrophic cardiomyopathy, and congestive heart failure. All of this at the ripe old age of 35 but had been fighting for answers for years and still trying to find answers for links between low potassium and others.Checked liver and kindneys and others but doctors favorites answers now are that the medications is causing this although these were there before starting the medications.I have since had a defibulator implanted for cardiac arrest risk because of the cardiomyopathy.Hypertrophic cardiomyopathy is generally induced during activity or shortly there after.
    Anonymous 42789 Replies
    • October 22, 2008
    • 07:21 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.