I am a new member here struggling with watching my mother slowly deteriorate as her CIDP progresses with no signs of letting up.
A year ago she experienced a foot drop. At first it was assumed to be a pinch nerve but weeks later the pain began. The pain was so excruciating in her leg that she was wheelchair bound for months. Not long after she experienced a wrist drop. Again doctors said it was a pinched nerve.
To make a VERY long story much shorter, she has had every test you can imagine (multiple EMG’s, muscle tests, bloodwork, lumbar puncture etc.) Everything yielded inconclusive results so her neuro ordered a nerve biopsy in January of 2015. The pathologist’s final diagnosis was CIDP.
Her foot drop resolves sometimes but always returns. Her wrist drop resolved but she has permanent nerve damage in her hand and cannot use the 3 of the fingers (significant muscle wasting and it’s caving in). Her newest symptom is muscle wasting in her calves. The pain in both of her legs, from the knee down, is absolutely excruciating on a daily basis. She is on such high doses of pain meds (Hydromorph Contin, hydromorphone, percocet, lyrica etc) and it doesn’t help.
She has been on Cyclophosphomide since March (100mg daily, with a 3 week break because of low WBC).
Aside from the cytoxan, no other treatments have been discussed or considered. Is this normal? Her neurologist is VERY well known but I don’t feel enough is being done. Her legs are wasting away, the pain is unbearable and I think she is getting tired of fighting this with no end in sight. She has gone from a relatively independent 60 year old woman to unable to do much of anything for herself.
Thank you for reading and for allowing me to talk about this in your community.