2011 and 2012 - Looking for a Diagnosis

January 2012

Feeling a bit better overall.  Headaches tend to come and go – they tend to be worse in the morning.  Continue to have some dizziness – fall off ladder, fall on bicycle, fall running, I have to really watch myself around stairs and heights, and I avoid running.  Muscle aches/pains worsening (fibromyalgia?). 

ACE levels go up to 80’s then 90’s.  My doctor orders a Gallium scan to look for possible area to biopsy for sarcoidosis.  I appear to have a mastitis in left lower chest/upper ab (this area has been ‘itchy’ for 2-3 years), but nothing else is noted.

February 2012

MRI is repeated on Jan 30.  Some lesions have come, and some have gone.

Blood Tests (2011 and 2012)

Lots of tests!  Thyroids have fluctuated but are under control.  Upon entry to hospital in February of 2011, my blood sodium level is critical at 117 (normal 135-145), blood glucose is high at 137 (normal 70-110); all else is pretty normal.  RBC has been running low at 3.76 in Oct. (normal 4.0+), glucose has been fluctuating a bit (usually a little below normal), alkaline phosphatase is usually normal but has been low at 39 (normal 50-136), Angiotensin Converting Enzyme has gone from 60 to 93 and back down to 67 in 2011 (normal 9-67), Luteinizing Hormone is low, Prolactin is high, Calcium sometimes low, Ferritin a bit low

In July, my rheumatologist tested Myeloperoxidase (MPO) antibodies .. first tested slightly high at 7 (normal <6), repeated test and result was ‘6’.  These are commonly associated with small-vessel vasculitides.

Spinal Fluid (four taps from 2011 to 2015)

Many things were tested, all negative.  Doctors said results were ‘very clean’.  My spinal ACE level was 1.4 (normal <5).  In 2015, a seratonin metabolite tests low.

 

Category

Illness/Problem

Test Date (2011)

Test

Results

TBD

TBD

2/22

Brain CT

Unremarkable. No evidence of hemorrhage.

 

TBD

2/24

Brain MRI

Multiple enhancing lesions involving the supratentorial and infratentorial brain. Primary considerations include metastatic disease. Other considerations include infection, lymphoma, or sarcoidosis.

 

 

 

 

 

Disease

Cardiopulmonary

2/22

Chest X-Ray

No evidence of acute cardiopulmonary disease

 

 

 

 

 

 

Cancer

2/23

Lumbar

Negative for malignant cells

 

Cancer

2/24

CT Chest

No evidence of primary or metastatic disease in the chest

 

Cancer

2/24

CT Ab & Pelvis

No evidence of primary or metastatic disease in the abdomen or pelvis; single 5 mm hypoenhancing lesion within segment 7 of the liver which is probably benign; at least 5 hypoenhancing splenic lesions largest of which measures 2 cm and shows scalloped borders (likely benign)

 

Cancer

2/25

Lumbar

Negative for malignant cells

 

Cardiopulmonary

3/3

X-Ray

No evidence of cardiopulmonary disease

 

Cancer

3/15

Blood

Paraneoplastic antibody panel - negative

 

Cancer

3/28

PET/CT

No abnormal hypermetabolic foci suggestive of metastatic disease; 2.5cm hypodensity within the spleen without increased metabolic activity

Parasite

Giardia

3/15

Stool

EIA Negative

 

Cryptosporidium

3/15

Stool

EIA Positive

 

Blastocystis hominis

3/15

Stool

Positive

 

Endolimax nana trophozoites

3/15

Stool

Positive

Infection

MRSA

2/23

Nasal

No MRSA isolated

 

VRE

2/23

Perianal

No V.R.Enterococcus isolated

 

I created this chart Spring 2011.  At that time, I thought Lymphocytic Hypophysitis was a likely culprit.  However, given the rarity of this disease and my limited access to info, I wasn’t able to find anything indicating it could cause multiple small lesions.  So, I began to suspect neurosarcoidosis.

 

Possible Triggers/Illnesses

 

Multiple, disperse, small brain lesions

Enlarged Pituitary Stalk

SIADH

Diabetes Insipidus

Headache

GI Issues

Myalgias

Joint Pain

Lymphocytic Hypophysitis

23

1

3

2

3

3

2

2

1

Neurosarcoidosis

23

3

2

2

3

2

1

2

2

Langerhan's Cell Hystiocytosis

22

3

2

2

3

2

1

2

1

Lupus

21

2

1

3

2

2

1

2

3

Multiple Sclerosis

22

3

1

3

2

2

1

3

1

Wegener's Granulomatosis

21

2

1

2

3

3

1

1

2

Sjogren's Syndrome

19

2

1

1

1

2

3

2

3

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Key:

 

 

 

 

 

 

 

 

 

1 = unlikely symptom

 

 

 

 

 

 

 

 

 

2 = possible symptom

 

 

 

 

 

 

 

 

 

3 = common symptom

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Possible Triggers/Illnesses

 

Other Indications

 

 

Contra Indications

 

 

Lymphocytic Hypophysitis

 

Hashimoto's

 

 

 

 

 

 

Neurosarcoidosis

 

Facial tingling, floaters, achy ankles

 

 

 

 

Langerhan's Cell Hystiocytosis

 

Rash on scalp

 

 

 

 

 

 

Lupus

 

Butterfly rash?, mouth sores

 

Negative ANA

 

 

Multiple Sclerosis

 

Muscle spasms

 

 

No sign in lumbar

 

 

Wegener's Granulomatosis

 

 

 

 

 

No respiratory symptoms

 

Sjogren's Syndrome

 

Hashimoto's, GERD, dry mouth

Negative ANA