- CASE FILE
So many different neurological, digestive, neuroendocrine, musculoskeletal mystery symptoms.
ABOUT THIS CASE FILE
have arguably had strange symptoms all my life, but now I am down to 78 pounds and extremely high blood pressure and cannot seem to stop whatever this is. One odd symptom is I developed strange reactions to foods that were not very fresh (tyramines?) which produced first hallucinations then muscle jerks and then awakenings from sleep every 5 minutes for first 2-3 hours of sleep. They also now send my blood pressure soaring. A diagnosis of Sjogren’s syndrome years ago might have been able to explain some of my symptoms such as years of profound life-altering fatigue, widespread tedonitits that never goes away, and perhaps even the 30 years of liver enzyme elevations that otherwise remain unexplained but cannot explain the further changes that started 5 years ago with spots and nerve pain (shingles?) but recurs. That lead to what feels like “fight or flight” that just never shuts off, unusually high blood pressure, little sleep, with further surges that cause sensations of burning up, very rapid heartbeat (and some atrial tachycardia), headaches, sweating, hyptertensive crises, dizziness. Have been to the ER. Can’t have lunch with friends even as quickly causes “overstimulation” I went from profound fatigue all the time to feeling like I am on speed (but not in a good way…) all of the time.
I am am also very reactive to things that others say are “impossible” , for example an ultrasound exam of the shoulder led to a week of extreme pain and swelling, arm color changes, and a fever and another “impossible” reaction is blood draws cause me aftereffects hours later. Many many medications give dysphagia or reflux Some other symptoms – too many to mention them all - include recurrent severe vertigo, electric sensations in head and chest (in the places where I had the “shingles” rash”), chronic diarrhea, weight loss, a strange visual aura triggered by sleep, possible optic nerve atrophy, neurological reactions to vanilla and anise, sensitivity to gluitimates and chemicals, epiretinal membrane in eye of unknown cause, itching, burning in feet, intermittent red palms and soles, cold things feel hot when touched with fingers, some foods cause significant PVCs, nerve pain bridge of nose, tinnitus, feel sick in the sun, transient swellings and redness, and permanent swelling and cavitations on face following allergic reactions . Sometimes now the sympathetic excess will stop and is replaced by pains in connective tissues.
Diagnostic possibilities bandied about but not 100 percent fit with little to no proof include pheochromocytoma, hyperandrenergic POTS, mast cell activation syndrome, herpatic neuropathy, low MAO enxyme activity but have never been on mao0inhibitors, dysautonomia, chronic viruses, all from Sjogren’s.
Test abnormalities include elevated anti-nuclear antibodies, recurrent elevation in liver enzymes GGT, ALT, and AST, elevated serum metenephrines during attack but only 1.5 times normal and so far no elevations in urine, Igg subclasses that include slightly low than normal IgG3 and an atypical pattern with more Igg2 than Igg1. But many blood tests stubbornly normal (e..g TSH for thyroid and cRP for inflammation). I feel one obstacle to help is that normal for me on blood work and urine tests is often below the normal range so that elevations with illness just put me into the normal range, and are ignored.
Debility started with dental work “allergy”
Which included basophilia, which kead to sjogrens and then the change in symptoms with the recurrent virus as described above. Deeper background includes diarrhea from age 6 months to 4.5 years, reflux and indigestion that started in childhood, dermatographia that started at age 10, always thin, early menarche (age 11). Mother died of a mystery neuroendcronie cancer that may have been extra-plulmonary small cell carcinoma and had some of the same symptoms I have now. Father also died of cancer at age 54.
Are you exhausted from reading this yet? I am. Thanks for reading.