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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Where should I begin? I'm 56 years old and currently living with (not dying from) Metastatic Breast Cancer (MBC). It is in remission currently for almost four years now. I had an earlier stage initially since late 2013. Now, after years of treatment I am being diagnosed with sensory neuropathy which so far oncologist does not feel is caused (solely at least) by the chemo drugs I've had through these years. She believes this because after stopping what we thought was the culprit, my symptoms only got worse despite many months of gabapentin.Now a neurologist is testing me further. I have an EMG scheduled for all four limbs as deep tendon reflexes are absent in all limbs. My pain, numbness, etc is terrible and the weakness especially in my lower legs (knee down) is affecting my entire life. I have learned to cope with a terminal cancer dx, but the limitations I have now has made facing each day a challenge. Even through cancer treatment, I hiked and stayed active. Now I am battling depression, anxiety, and fighting the urge to just sleep. Even typing this out is exhausting and difficult. I will know more next month about my dx. Just feel I may need a bit of guidance from people who are going through similar. Thank you
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Hello @neverforsaken, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. No matter what type of neuropathy you have can give you those downer days. I have small fiber peripheral neuropathy but only have numbness as a symptom in addition to a few other autoimmune conditions. What has helped me is to learn as much as I can about the condition and possible treatments and therapies. You are definitely not alone as I'm sure there are other members here on Connect that can relate with what you are feeling.
You may want to read through some of the posts in the following discussions to learn what others have shared.
-- Sensory Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/sensenory-peripheral-neuropathy/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Here are two really good neuropathy sites for learning more about the condition and alternative treatments.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
You mentioned you have an EMG scheduled soon. If you have some questions you have been thinking about, you might consider making a list to take to your appointment with you so that you can discuss them with your doctor or neurologist. If you can prioritize your symptoms, which bothers you the most?