From Tuesday, June 9, 2009
COLON SURGERY: 1’ colon removed (pre-cancerous pulup/tumor removed.)
HEAD/NECK/SHOULDER/THROAT PAINS: hundreds of daily: “pops” in neck, terrible stabbing pains in base of skull, throat, shoulder, with hundreds of random screams of “ouchhh” daily for months. Tests or Treatments tried: chiropractors, ibuprofen, hot packs, x-ray on neck normal, physical therapy, MRI on neck normal
BODY JOLTS & INVOLUNTARY MOVEMENTS START: electric jolt sensations and myoclonic type jerks and involuntary movements – mostly when relaxed. Movements will stop if I get up and move around. These come with or without loud screams, gasps or other vocal noises. Tests or Treatments tried: EMG normal, MRI of head and normal, pain meds no help, oral steroid by Physiatrist no help,
SLEEPING PROBLEMS: wake up every night and sometimes stay awake for many hours – happened entire 2008, but 2009 was better.
MOUTH/JAW/TONGUE START: randomly the tongue tingles or twtiches, the jaw & cheek have pain (like someone is pulling off my face), the mouth/throat/tongue/and/or gums get ice cold, the mouth waters for hours. Tests or Treatments tried: more blood work normal, except a 7x higher than normal inflammation which neuros said had to be a lab error. Got steroid shot in head where the stabbing pain is. EEG recommended due to small seizure like movement when injecting the steroid.
MUSCLE TWITCHES START: randomly, different muscles twitch, hundreds of times daily (it is like body is making popcorn). Tests or Treatments tried: took a coupld stress free vacations. (I now its not stress related anyway but since the doctors cannot diagnois me, they don’t know what else to think. No help – same symptoms. Seen Neurologists with no answers. Got another steroid shot in head.
KNEE POPPING STARTS: just like neck from 10-07, one day it started to “pop” with pain hundreds of times daily. This made it hard to walk for months. Tests or Treatments tried: knee x-ray-normal and a special Lymes Blot test in California = negative.
Another Neurologist: Repeated inflammation test=normal.
Rheumatologist ran more blood test=normal
OTHER SYMPTOMS IN 2008-2009:
INVOLUNTARY MOVEMENTS / TWTICHED CONTINUE
ALL MOUTH SYMPTOMS CONTINUE
GASPING FOR AIR (take in a huge gasp of air, happens randomly, a several times daily)
LEG WEAKNESS / PAIN
INSIDE ELBOW AND MIDDLE FINGER, LOWER BACK AND BIG TOE PAIN
HIGH PULSE 130+ doing nothing
HIGH BLOOD PRESSURE 145/97 average
HEART HURTS (just occasionally)
EAR ACHES/RINGS (CT of sinus area was normal)
NIGHT SWEATS (occasionally / only on head/neck area)
SKIN (acne, ichy, sweaty)
Tests or Treatments tried: Tried depression pills for 2 months with no help. I do not believe I have depression/anxiety issues though.
Tests or Treatments tried: Went on another fun trip to Disney World – had very strong symptoms most days
WEIGHT GAIN: (necklace didn’t even fit because my neck / stomach is getting fat).
Cortisol level checked and was high, so Endo specialist was recommended).
DIAGNOSED WITH CUSHING’S
4x6mm tumor on pituitary and high cortisol level. Scheduled for consult/surgery at Mayo in July.
UNDIAGNOISED and called Borderline Cushing because symptoms not are typical of Cushings.
They reviewed MRI – says its either a tumor or a rathke’s cleft cyst
CHEST XRAY – normal
EKG – normal
EMG – normal
ENT Dr. – normal exam – cannot explain mouth symptoms
DERMOTOLOGY – skin cancer diagnosed, shaved and treated
MRI on neck & spine- normal
EEG – normal
CERVICAL SPINE MRI – normal
MOVEMENT LAB: my movements don’t fall into the myroclonis catagory because I move faster than 100 milliseconds (?), even though they are a split second movement
SENSORY PROVOKED POTENTIAL NEUROLOGY LAB – normal
DEX SUPPRESSION & CRH & CORTISOL TEST, did not suppress, and had high and normal cortisol
OTHER URINE AND BLOOD TEST
PARANEOPLASTIC PANEL blood work – results show striated muscle antibodies which is either a neuro, myasthenia gravis, or a hidden tumor so get a lung scan recommended
LUNG/ADRENA CT SCAN: did not show lung tumor but showed enlarged or nodules on both adrenal glands
blood test & urine- (did 24 hr urinary metanephrines and fractionated catecholamines and blood aldosterone concentration and renin activity – all normal) (cortisol at highest end of normal)
new MRI – same as before
new CT of adrenals – no change. Await new results of striated muscle antibody test.
Dr recommends I wait 6 months to see what changes.
bi-lateral neuro angiogram confirms Pit. Cushings
Pituitary Surgery May 12, 2010
Back to work after 2 weeks. Its been 1 month since surgery and muscle pain and weekness is gone, heart pounding gone, high blood pressure down, but still have unusual symptoms such as involuntary movements and mouth symptoms. Still have enlarged adrenals.