Discussions By Condition: I cannot get a diagnosis.

Long list of symptoms, 3+ years w/no diagnosis

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • March 22, 2011
  • 04:02 AM

For the past 3 years I have had many symptoms that have steadily been becoming worse and more debilitating. Every doctor I see says the same thing, "Oh well you just have chronic pain. You will just have to live with it. The only consistent abnormal finding is high white blood cell count, but I'm not alarmed by it." Then I'm sent on my way. WBC is consistently around 13000 or higher, btw. I am currently seeing a rheumatologist and he is testing thyroid, and for rheumatoid arthritis. At this point though, it seems doubtful I will ever have a diagnosis. Below is a list I bring to every new doctor:

Abdomen RLQ/lower back pain- 2 yrs (feels like kidney stone but isn't, raidiates to lower R flank, started around same time as R iliac vein DVT, pain is so intense that it often passes the 1-10 threshold, any movement whatsoever makes it MUCH worse, have been unable to work several months because of this symptom.)
-Have had multiple CT, MRI, 2 laparoscopy, appendectomy (appendix was mildly inflamed), multiple pelvic ultrasounds, several pain therapies including meds and injections, colonoscopy (was told at the time of procedure there was slight inflammation, but this info was not included on report), 2 upper endoscopies (one revealed Mallory-Weiss tear as a result of extreme nausea.)

Chest pain- 3 yrs (radiating to shoulder/shortness of breath.)
-Have had CTs(including 2 that showed 8 pulmonary nodules that are stable or shrinking), echocardiogram (again slight inflammation, but nothing anyone was concerned about), EKG, pulmonary function tests (showed nothing, not even problems from my asthma), stress echo

Frequent migraine-like headaches (I do not get an aura or nausea with these headaches, as I always have in the past when I've had a migraine. Also, my migraines have always been connected to birth control pills, and I have never had one while not on the pill.)

Fainting episodes- 2 wks (I all of a sudden feel extremely hot and dizzy, then I'm on the floor. Went to ER the first time, nothing was found.)

Rashes- 6 mths (Show up for no reason, mostly don't itch (though I have seen them bleed before), look like raised red dots, mostly show up on arms and legs though I often get worse rashes on feet when in the sun for long periods of time)

Mouth sores- Not sure length of time (Have always gotten these, however in the past few years they have become much more frequent and long-lasting.)

Extreme fatigue- 3 yrs, but has been progressively getting worse, seems to have nothing to do with how little or how much I sleep. I have insomnia due to the pain, but then sleep 10-12 hours and wake just as tired.

Painful swollen joints- 3 yrs, but progressively getting worse (Occurs mainly in fingers, toes, hands, and feet; also occurs in knees, wrists, and elbows.)

Loss of appetite, gradual weight loss- Off and on for past year or so

Fingers/toes get very red, splotchy, swollen, and very itchy/burning/feels like they're on fire whenever warm- Has been happening for as long as I can remember, usually seems to be more with having been cold & then warming up, hands/feet seem to need to be at room temp constantly to avoid irritation, the rest of my symptoms always seem worse after this happens

Hospitalized twice for pain management, during both stays I experienced low grade fever, inflammation in bloodwork, tachycardia (110-145 bpm resting), extreme nausea. All would go away in a few days, drs would assume I magically got better and send me home. A few days later many of the symptoms would be back.

WBC consistently 13000 or higher

Asthma (severe when younger, doesn't really take much management now)

Polycystic Ovarian Syndrome

Borderline Protein C Deficiency

R Iliac vein DVT Apr '09 (was on Yaz at the time)

Kidney stones in past, but only one remaining is 2mm on left side, none noticeably passed since 2007 (previous urologist found they were caused by low levels of citrate (only 50ml found on 24hr urine test), and said he expected me to have many further kidney problems. Was unable to tolerate potassium citrate due to muscle cramping.)

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1 Replies:

  • Have you ever been tested for "Lupus"?This sounds alot like my mother in law. I know she gets red spots when she is in the sun. She has to wear 50+ sunscreen. Or protective clothing. She has many joint problems as well. Ask your doctor about this.
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