May 13, 2010
1985 (approx) difficulty manipulating hands, tingling and pain for +/- 2 weeks. Unexplained
1997 sudden balance probs, difficult word finding, fatigued, Poor concentration Pos Romberg, neg CT, MRI showed 2 small foci in periventricular white matter on right.Off work 2 months. Gradually improved, but never quite back to baseline. Diag prob viral encephalitis.
2005 JUNE 2 week period of light sensitivity, no headache, no abnormality found by optometrist
OCT continuing balance probs, esp when fatigued or hot. Normal neuro exam. MRI- moderate amount of hemispheric white matter lesions plus solitary lesion in basal ganglia on right.
2009 anemia related to uterine fibroids. 14 iron shots Apr-Oct. Fatigued, unable to work
JULY shingles lt buttock
JULY cellulitis lt bottock
AUG abdominal hysterectomy
OCT began pool exercises three times a week
NOV attempted return to work. Falling asleep at desk, ++ fatigued. Coworker noticed I was starting to limp- I was unaware. Said I didn't seem on top of things. Off balance and mental fog. Went off work again
DEC body seems to be getting progressively stiffer. Missed exercises over Xmas and body was less stiff. Continue exhausted and many 10 min naps during day. Poor sleep, mental fog, limping when tired
2010 JAN returned to exercises and stiffened up again, so quit. Saw rheumatologist-normal exam
did a sleep record- 20 awakenings recorded, longest sleep was 1hr 18 min
FEB saw internist who started modafinil- improved alertness almost immediately, but nowhere near baseline. Not sleeping during day, but continue to need to rest. Oximeter normal. Kept hourly log to monitor stiffness and pedometer steps taken to find corrolation. Seems very low tolerance for any exercise. Sleep slightly improved.
MAR cognitively doing better, sleep gradually improving, generally waking only for cramping legs. Pulling myself up the stairs, limping a lot when tired. Continue with very little activity
APR MRI showing numerous foci in subcortical regions of both hemisheres- suggest chronic microvascular disease. Saw physio, who found trendelenburg gait, atrophy of buttocks mucles, says evidence of nerve damage Lt leg. BP 165/95 at Dr office, taken off modafinil and went straight backwards in cognition. People commenting that my voice slowed down without inflection again. Sleep deteriorating, but never got as bad as it was. Monitored BP- remained normal.
MAY back on modafinil. Physio doesn't want to follow until after diagnosis for fear of causing injury. Got stuck in bathtub, had to be lifted out. Squatted in kitchen, couldn't get up and had to slide to stairs and once I pulled up 2 steps could stand. Neuro appt not until Jan 2011. Odd gait continues along with back and leg cramping.
JUNE- turned down for disability, doesn't the fact that I had 14 months of accumulated sick time give them a hint that I don't call in unless I'm sick???? Union submitted an appeal. Using safety aids in bathroom, pain and tingling reduced, cognition still doing better. Had a week with a feeling like an icepick in my side- couldn't bear the touch of a bra.
JULY-started physio again- she thinks I have muscle atrophy in my butt, then when they cut the abdominal muscles for surgery it was too unstable to heal. Pain and tingling due to local nerve damage. In bed for 4 days after first set of exercises. Now I'm leaning to chronic fatigue. Doing only a couple of minutes of exercises at a time. Sudden inability to focus right eye- Minor aching.