Discussions By Symptom: Lymph Symptoms

Over 20 doctors & countless tests in 18 months, but still no diagnosis. Any ideas what I have?

Posted In: Lymph Symptoms 1 Replies
  • Posted By: Anonymous
  • September 12, 2014
  • 08:34 PM

I am the wife of an active-duty military member (in the US Air Force) and the mother of four kids (ages eleven and under). Most of my medical care is provided at Fort Bragg’s military hospital and its clinics. Though I have full healthcare coverage, access to appropriate care can be limited in the military system.

I have seen over 20 different providers across 12 specialties in just 18 months. They have been unable to diagnose me. These numbers do not include ER doctors, radiologists, or providers who fill in for my primary care manager (a frequent occurrence at the military treatment facility). I remain undiagnosed for a set of symptoms that has taken over my life:

• rectal bleeding concurrent with my last three periods (for four months);

• new stomachaches occurring daily (for one month);

• ongoing, severe fatigue (at this level of severity for about a-year-and-a-half);

• night sweats that can be drenching (for nine months);

• fluctuant, non-tender left supraclavicular lymphadenopathy (for nine months); and

• neurological degeneration (for example, new-onset bladder/bowel dysfunction and lower/upper neuropathies).

Seeking diagnosis with the hope of treatment and healing, I have undergone the following tests and procedures:

• ultrasound scans on my pelvis, breasts, clavicle, and spleen/left kidney;

• MRI scans of the brain and spine with and without contrast;

• CT scans of the adrenals/kidneys and neck/chest/abdomen/pelvis;

• PET-CT from skull to thigh;

• standard and ambulatory EEG tests;

• lower and upper EMG with NCV tests;

• three regular sleep studies and an MSLT;

• bilateral diagnostic mammography;

• urodynamics & bladder cystoscopy;

• rectal scope;

• stool culture;

• repeated 24-hour urinary and midnight salivary cortisol tests;

• insulin resistance/OGTT; and

• countless other blood and urinary laboratory tests.

I have 15 active medical diagnoses, which cannot explain my new symptoms. Listed by year of initial diagnosis, they are:

• 2009: migraine with aura; vasovagal syncope; chronic sinusitis;

• 2010: degenerative disc disease (DDD); lumbago;

• 2011: obstructive sleep apnea (OSA); excessive daytime sleepiness (EDS);

• 2012: polycystic ovary syndrome (PCOS);

• 2013: iron deficiency; vitamin D insufficiency; overactive bladder syndrome (OBS); history of recurrent urinary tract infections (UTI); and

• 2014: hyperandrogenism, insulin-resistance, & acanthosis nigricans (HAIR-AN); bilateral carpal tunnel syndrome (CTS); umbilical hernia.

Currently, I use a bipap machine to assist with nighttime breathing, wrist braces for the carpal tunnel, and 100 mg Modafinil daily to counteract the fatigue (prescribed in June 2014). I take no other medication. Finally, I have lost over 25 pounds in four months by limiting my sugar intake, but this has not relieved my symptoms. I am grateful for any help you can offer me!

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