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.
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Category |
Illness/Problem |
Test Date (2011) |
Test |
Results |
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TBD |
TBD |
2/22 |
Brain CT |
Unremarkable. No evidence of hemorrhage. |
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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. |
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Disease |
Cardiopulmonary |
2/22 |
Chest X-Ray |
No evidence of acute cardiopulmonary disease |
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Cancer |
2/23 |
Lumbar |
Negative for malignant cells |
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Cancer |
2/24 |
CT Chest |
No evidence of primary or metastatic disease in the chest |
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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) |
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Cancer |
2/25 |
Lumbar |
Negative for malignant cells |
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Cardiopulmonary |
3/3 |
X-Ray |
No evidence of cardiopulmonary disease |
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Cancer |
3/15 |
Blood |
Paraneoplastic antibody panel - negative |
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Cancer |
3/28 |
PET/CT |
No abnormal hypermetabolic foci suggestive of metastatic disease; 2.5cm hypodensity within the spleen without increased metabolic activity |
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Parasite |
Giardia |
3/15 |
Stool |
EIA Negative |
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Cryptosporidium |
3/15 |
Stool |
EIA Positive |
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Blastocystis hominis |
3/15 |
Stool |
Positive |
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Endolimax nana trophozoites |
3/15 |
Stool |
Positive |
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Infection |
MRSA |
2/23 |
Nasal |
No MRSA isolated |
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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.
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Possible Triggers/Illnesses |
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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 |
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Neurosarcoidosis |
23 |
3 |
2 |
2 |
3 |
2 |
1 |
2 |
2 |
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Langerhan's Cell Hystiocytosis |
22 |
3 |
2 |
2 |
3 |
2 |
1 |
2 |
1 |
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Lupus |
21 |
2 |
1 |
3 |
2 |
2 |
1 |
2 |
3 |
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Multiple Sclerosis |
22 |
3 |
1 |
3 |
2 |
2 |
1 |
3 |
1 |
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Wegener's Granulomatosis |
21 |
2 |
1 |
2 |
3 |
3 |
1 |
1 |
2 |
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Sjogren's Syndrome |
19 |
2 |
1 |
1 |
1 |
2 |
3 |
2 |
3 |
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Key: |
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1 = unlikely symptom |
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2 = possible symptom |
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3 = common symptom |
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Possible Triggers/Illnesses |
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Other Indications |
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Contra Indications |
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Lymphocytic Hypophysitis |
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Hashimoto's |
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Neurosarcoidosis |
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Facial tingling, floaters, achy ankles |
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Langerhan's Cell Hystiocytosis |
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Rash on scalp |
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Lupus |
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Butterfly rash?, mouth sores |
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Negative ANA |
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Multiple Sclerosis |
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Muscle spasms |
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No sign in lumbar |
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Wegener's Granulomatosis |
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No respiratory symptoms |
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Sjogren's Syndrome |
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Hashimoto's, GERD, dry mouth |
Negative ANA |
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