Sunday, August 5, 2012


       This blog is here to help in the search for a diagnosis for my aunt, a Catholic nun, who after a visit to Guatemala for missionary work, found herself stuck with an obscure illness which, after seeing many different doctors, has remained undiagnosed. On February 13, 2010, she got sick and has been sick pretty much since then.  The symptoms come for 10 days and she is symptom-free for 7 days.  When the symptoms first started they lasted about a month and she didn’t notice the cycle until May 2010.  From September 2010-June 2011, she was doing some alternative medicine and it broke the cycle but the symptoms returned randomly during that time.  Since June 2011 until present the cycle persists.  The only variation is the intensity of the symptoms. Here is a list of the symptoms and what has been ruled out:

-Pressure on the left side of head.  Feels like there is something pushing down on her head.  It is localized at times about 3 inches above her left ear and about the size of a half dollar.    At other times it feels like a band of pressure about 4 inches wide running from her left ear up toward the center of her head.  On really bad days the pressure is on the whole left side of her head. 
-Her head is incredibly heavy…feels like a bowling ball.
-At times her head feels like a sloshing bucket of water.
-The pressure feels cold.  The pressure doesn’t cause pain.  The only way she can describe it is that it makes her head feel nauseous.  I suppose one would call this vertigo.  Moving her head in any direction worsens this feeling.  There are flashes of what feels like electricity in her head that last a few seconds.    She doesn't see (i.e. auras/flashing lights) or smell (i.e. burning) anything unusual.
-Her left eye feels strained and small and looks like she has a black eye.   There are broken blood vessels under her left eye as well.  Her vision doesn’t change.  Her eyes can be described as looking grey and glassy.  
-Her little finger of both hands and her big toe on her right foot go numb.  Her right thigh and joints ache.  The end of her nose and upper lip tingle and have some numbness.
-Her limbs feel very heavy, like lead.
-Extreme fatigue/exhaustion
-Blood pressure is quite low usually around 90/60.
-Ringing/clicking in her ears.
-It feels like the pressure in her head is snapping/crackling…similar to a bowl of Rice Krispies
-The pressure points on the back of her head (base of the skull) are very painful when touched.
-In general, she feels terrible when the symptoms are present.  Not moving is the only thing that helps.

Doctors, Treatments, and Outcomes


February 13-March 2, 2010
Dr. Guerra, GP
(Succotz, Belize)
Urinary Tract Infection/Dehydration
Referral to Internist
Cipro (10 days)
UTI cleared

February 23, 2010
Dr. Godinez, Internal Medicine (Belize City, Belize
No noticeable effect

March 4, 2010
St. Vincent Hospital ER (Bridgeport, CT)
CT-Scan head

April 2010-June 2011
Dr. Frank Bia, Infectious Disease, (Bridgeport, CT)
Hemiplegic Migraine
Referral to Neurologist after ruling out TB, Diabetes, MS, Muscle wasting diseases, glandular related problems, cancer, cholesterol, parasites, Malaria, Dengue Fever, depression, Lyme Disease
MRI head

June 2011 Recommended a referral to the National Institute of Health’s Undiagnosed Disease Program

July 2010-June 2011
Dr. Anthony Quan-Hong, Neurology (Fairfield, CT)
Hemiplegic Migraine after ruling out AVM, MS, Muscle wasting diseases, Lyme Disease, nerve damage
Lumbar Puncture, MRI neck,
Topamax (adverse reaction) switched to Amitriptyline
No change to symptoms

March 2010-June 2011
Dr. Kathy Fairbanks, Alternative Medicine (Guilford, CT)
Electro-magnetic Therapy and Homeopathic remedies
Broke the cycle of symptoms

May 2011
Dr. Klass
(Guilford, CT)
Lyme Disease
Homeopathic remedies
No noticeable results

May 2011
Dr. Santelli
(Bridgeport, CT)
Fungal Sinusitis/Lyme Disease/Weakened Immune System
Doxycoline.  Prednisone & Diflucan for 6 weeks
No noticeable results
Jan 2012
Dr. Heine
No noticeable results
Feb. 2012
Dr. Everett (Corpus Christi, TX)
Vascular/Cluster Headaches
2 Months, No noticeable results
Feb. 2012
Dr. Barrada-Lovoi
(Calallen, TX)
Sinus Infection and Muscle Tension
No noticeable results

 *38 years old
Pre-existing condition:  Hypo-thyroidism (75mcg Levothyroxine daily).  her thyroid has been blamed for her symptoms and has been tested month after month for the last 2 years and is always well within the normal range.
When the symptoms first started her cholesterol was high (225) but it was tested twice in the last 6 months and has been under 200.