peripheral neuropathy

meandbob Member Posts: 1 Member
edited March 2014 in Caregivers #1
my mom is 90. she was healthy as a horse prior to finding cancer of the uterus. the onocologist said surgery. 12-15-04 after which she said chemo and radiation as extra precaution. no side effects until near the end. then 3-20-05 numb hands, incontinent, psycotic behavior which went away after about 8 hours in the hospital during which time she cried constantly with pain. the second day she got back to sort of normal but still said a few off the wall things and didn't know where she was. she had a second episode that wasn't nearly as severe as the first on the 2nd night in the hospital. during her third or fourth day she got back to normal brain wise but had hardly any control of her hands and was incontinent. she was very weak but soon got well enough to come home. the tests they ran showed nothing. no one mentioned peripheral neuropathy. i'm sure they didn't look for it and i was clueless. mom still had 2 internal radiation treatments to go so she did them after hospital stay. she had one more slightly out of it night lasting about 4 hours but she didn't cry just was like in another world. her next visit to onocologist she told him how weak she was. he said more exercise plus he gave her shots to increase red blood cells. drink ensure, megace to increase appetite and antideppressants. we went every week, he checked her blood and gave a shot for red blood cells. on 5-26-05 she had numbness in her hands again. because of the holiday no drs. were available so back to the er. the numbness turned to severe pain. she cried the rest of the day, probably 10 hours. they were giving her morphine which didn't even touch the pain. the next day the pain was gone but the hands were extremely swollen. the next day most of the swelling was gone. she was totally incontinent and was so weak she could hardly hold her head up. she had very little control of her hands. her voice was hoarse. she knew us all. as i said it was holiday weekend so a fill in dr who had never seen her before in his life, tookover and sent her to rehab to prepare her for going home. on tues her onocologist got back and i got the fillin to consult with the ono. who did try some testing but never mentioned peripheral neuropathy. her personal dr. got back and on the scene at which time i told him i didn't want her sent home again in her condition without an explanation and to get an ureologist for her urine and a neurologist for her hands and weak muscles. they did an mri which the neurologist said didn't show anything. he did a hand nerve study which told him she has corpal tunnell syndrome and prescribed wrist splints. no mention of peripheral neuropathy. the urologist looked at the bladder and then prescribed detrol la. no one told me how incontinent she was and she wanted to go home so bad and she could get around with a walker so i took her home. how unprepared i was. i am 64 years old myself and had to lift her, change her bed clothes, change her clothes with very little help from her since she was weak as a newborn kitten. i cried, she cried, i couldn't sleep. i thought i would have a stroke or heart attack myself. the first day was sun. so i couldn't get any help. the next day the home health nurse called and i asked about a bedside potty and they had one sent out that day. i had some padded underwear from when she was slightly incontinent with urinary infection. after a few horrible days and nights we are getting by. i forgot to mention the detrol la had made the incontinence worse instead of fixing it like i had thought from what the ureologist had told me. she don't take anything for that problem now. anyway during the time we are trying to cope, i searched the internet hoping to get a clue as to what was really wrong with my mom. i knew her and knew she was in good physical and mental health right up to the surgery in dec 04 so something else has to be wrong. that's when i discovered all her symptoms listed under one heading, peripheral neuropathy. they may never do a test and find this out for sure but in my mind and heart i feel sure this is what happened to my mom. i will never forgive the drs. for not at least suggesting this possible diagnosis instead of ignoring these obvious symptoms and just telling her to just keep walking, like it was all her fault because she wasn't walking enough. we are still in the middle of the biggest fight of our lives but thanks to the internet and lots of people and drs. and organizations who have taken the time to make all this information available, i have hope that there is light at the end of the tunnel. i will appreciate any comments or suggestions. i feel 100% better just saying all this and hoping someone will read it. someone out there might even know mae. she plays a fiddle.