Tuesday, June 9, 2009

Lor, pituitary bio

9-07

COLON SURGERY: 1’ colon removed (pre-cancerous pulup/tumor removed.)


10-07

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


1-08

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,


1-08

SLEEPING PROBLEMS: wake up every night and sometimes stay awake for many hours – happened entire 2008, but 2009 was better.


2-08

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.


4-08

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.


8-08

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.


11-08

Another Neurologist: Repeated inflammation test=normal.


12-08

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

FATIGUE

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)

NECK HUMP

SKIN (acne, ichy, sweaty)


1-09

Tests or Treatments tried: Tried depression pills for 2 months with no help. I do not believe I have depression/anxiety issues though.


3-09

Tests or Treatments tried: Went on another fun trip to Disney World - had very strong symptoms most days


3-09

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).


5-09

DIAGNOSED WITH Cushing's

4x6mm tumor on pituitary and high cortisol level. Scheduled for consult/surgery at Mayo in July.


7-09

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

COLONOSCOPY

MAMMOGRAM

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


9-09

LUNG/ADRENA CT SCAN: did not show lung tumor but showed enlarged or nodules on both adrenal glands


10-09

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)


11-09

new MRI - same as before


12-09

new CT of adrenals – no change. Await new results of striated muscle antibody test.

Dr recommends I wait 6 months to see what changes.

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