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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 6 days ago | Replies (6004)Comment receiving replies
Hi Colleen,
I'm so glad that you're here for us. I'm brand new to this group, and I'm feeling very depressed. I'm a 61 year old female, who has had diabetes since 2006. I started having neuropathy symptoms in August of 2018. As of right now, I have neuropathy in both feet, both small and large intestines, bladder( I have a folley catheter), skin, and as of this morning, my throat. I am so depressed. I feel like neuropathy is stealing my life from me. I used to be so active, and love to go to lawn sales, and markdowns stores, and having lots of fun. But not anymore. I have a catheter bag on my leg, and now I need a walker. I can only sing two verses of the songs at church, because I run out of breath, and I used to love singing, and was in the choir. But not anymore. I'm currently being tested for neuropathy in my heart and lungs. Colleen, I have a question for you, can neuropathy kill you? Because I think that's what it's doing to me.
Thank you for listening to me.
Cathy
Replies to "Hi Colleen, I'm so glad that you're here for us. I'm brand new to this group,..."
Hi Cathy @cathyic58 — Neuropathy can be depressing just because it makes you feel so helpless. You are not alone in how you feel. The more you can learn about your health condition, the better you can advocate for yourself and hopefully find something that helps with your neuropathy symptoms.
I shared a short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed in an earlier post in this discussion. Here is a link to the post with the video: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=101#comment-321457
He also has many Youtube videos that you can find by searching using his name. I shared my story of my diagnosis of idiopathic small fiber peripheral neuropathy and what has helped me in an early post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
To your question, can neuropathy kill you, I don't think any of us can answer that question. Most members including myself have no medical training or background so can only share our personal experiences. You mentioned that you are currently being tested for neuropathy. It might help you if you can make a list of all of your concerns and questions so that you can discuss them with your doctor at your next appointment. I tend to need to write my questions down so that I don't forget to ask them when I see my doctor.
Hi Cathy @cathylc58 - My situation is similar to yours. My idiopathic autonomic neuropathy affects my voice, blood pressure, bladder, bowels, and balance. I'm 63 and it all came on very gradually starting 5 years ago and took 3 years to be diagnosed. Thankfully I'm not diabetic but I do self-catheter and must now use a roller walker to get around. The good news is that an MRI-compatibled InterStim bladder therapy "pacemaker" is on track for FDA approval so hopefully that will ease the bladder problem. Maybe that's something you could look into as well? https://www.fiercebiotech.com/medtech/medtronic-submits-rechargeable-sacral-neurostimulation-device-for-fda-approval
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i TRULY AM SORRY YOU ARE HAVING SO MUCH PAIN..I DID NOT KNOW YOU CAN GET THIS INTERNALLY, I WOULD LIKE TO KNOW MORE ABOUT THIS..I HAVE IT IN FEET UP YO KNEES, AND BOTH HANDS. KEEP SEARCHING