Spreading Sensory Peripheral Neuropathy - What next?
Hi all, this is my first post, but I've been lurking for a couple weeks as I look for information and guidance. I am a 55-yr-old woman who has been experiencing slowly worsening Sensory Peripheral Neuropathy. I received chemotherapy for colorectal cancer from November 2018 - April 2019. I developed neuropathy in my hands and feet at dose 10 of 12. I had pins and needles and numbness constantly. The neuropathy remained strong through 2019 but seemed to be easing up/going away during the summer of 2020. My husband and I hike a lot and while the neuropathy was still present, it was less intense and at times I could not feel the tingling in my feet.
Last year in May, I began to notice that the neuropathy was back and beginning to move up my legs and increase in intensity in my feet and hands. Over the last 12 months it has crept up into my pelvis, and from my hands up to my shoulders; it is now on my face with my tongue and lips occasionally tingling as well. My bladder and bowel function is affected already, and on occasion I can feel a "buzzing" in my abdomen. Thankfully the neuropathy isn't particularly painful aside from stabs of pain in my feet at times. But it can be uncomfortable.
I do not take gabapentin as whatever mild relief I get isn't worth the additional sleepiness and fogginess. In addition to the neuropathy, I have experienced a cognitive decline, and struggle to find words at times. I was referred to a neurologist, and have had MRIs, extensive blood work, and an EMG. The EMG showed that the neuropathy is sensory only. MRIs and bloodwork have all been normal. I do not have diabetes.
My neurologist sent in a referral to Mayo Clinic. I received an email at the end of last week informing me that Mayo will not see me. I'm pretty devastated to say the least. I know it's not personal, and I'm normally a fairly upbeat person, and can handle a lot, but all this waiting as my neuropathy gets worse is taking a toll. Given that it is a holiday weekend, I have not heard back from my neurologist, and have had too much time to mope while trying to find answers.
Any of you have a similar story with spreading neuropathy? I understand that this is likely idiopathic; but at what point do you stop looking for answers? I know there are other specialty clinics around, what has been your experience?