Why are doctors deaf to real lasting problems, and how can I get help?

1 answer | Last updated: Sep 10, 2016
Debbie 1/17/09 asked...

Debbie 1/17/09. I Am now 52, stroke ( not a Tia, 5 years ago at age 47) on1/17/09. R basal ganglia. No more improvement. Still tire easily, arthritis in left shldr/hip because residual weakness fatigue left joints unprotected (shoulder still collapses when I try to sleep on that side), still need to put left hand in pocket to get weight off shoulder when standing or walking too long, odd "feelings"on left side turned into pain, still trouble walking straight and have muscles spasm, and still lost flexibility, trouble with scheduling time/ dates - miss appt all the time, still some incontinence trouble, foot still drags when tired, bike/ eliptical instead of walking because it helps protect joints, still have to think about movement especially when tired, tired 2 hours into any activity, VERY frustrated docs don't hear/believe me. Finally quit job,couldn't keep up with physically or cognitively w/coworkers or learn new tasks ( or remember that they were assigned to me), no sense of time -15 minute breaks were seldom 15, because I can't seem to keep time- late to EVERYTHING, if I remember it at all. I am NOT lazy, but I am feeling like giving up trying anything due to no or low success. Embarrassed a lot. I "sucked it up"at work for 4 years post stroke, hid deficets from boss, finally got caught and tasks were being taken away. Plus shoulder/ neck backpain from pushing myself so hard. Put in 4 hour shifts and was so exhausted that I came straight home to hot pad and muscle relaxers and many times never made it past couch, stairs too much. Zero life past short shift... Even 4 years post... Hard to concentrate on work with leg,back,shoulder pain. Neurologist told me get over it, neurophys said I cause problems by self monitoring too much..HELP. No one acknowledges my deficets are from stroke because I look normal , am positive, and am still intelligent... Cognitive troubles (although I test well) include getting "lost" driving( suddenly do not know where I am in relationship to known markers), can't figure where things are,nor put things back (not sure where they go, how to organize), lose things daily, overwhelmed easily, struggle to keep track of things (gave bill paying over to husband because I lose track of dates, amounts, where did I lay Envelope down, miss things going on around me, ask same question of husband,son without realizing it, etc, etc, etc!). No support groups in area, (if I had cancer, there are plenty of those). Trouble socializing because I lose track of what is going on, VERY embarrassing. Trouble following sermons... Staying home more and more... Where do I turn... Miss people and much needed paycheck... Just couldn't keep up,and I TRIED for 4 YEARS on the docs saying that I was just fine... Left to my own devices to cope and figure how to heal/ recover lost abilities. tired of being category of "full recovery" by docs who just do not listen... How many other post stroke patients that specialists state are "fully recovered" are in my boat? Why do they insist that we are able to work? Where are the patient advocates? I wish so badly that I could get back to where I was 5 minutes before I had stroke, and have worked so hard toward that goal... And I just haven't ... Not for lack of a gung-ho, can do attitude.

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Debbie 1/17/09 answered...

(Debbie 1/17/09 r basal ganglia stroke continued) I couldn't even verbalize my questions or concerns for roughly first two years... I was " punch- drunk" happy all the time, " just glad to be here" ... But I always knew things were not right, couldn't form questions regarding this, and did not have energy to pursue doctor appt, ... Then did not know what to say or ask... Then had to wait another 3 months to see my own doc, so saw others, which left me falling through the gaps longer. Phys ther did not even notice my foot drop at first, then told by her to let right (strong side) weaken up to match left stroked out side to ease spasms, then told one leg was much shorter than the other( I figured out not true...continued suffering when approx 3 plus years out a different Phys ther noted that I was spasming and it was pulling my hip,back out of place). To cope, I finally wore the same sandles for over 4 years... Came up with this on my own. I have felt very alone and isolated in my struggle to get better. Sorry for long statement... Trying to give full picture of my situation.