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Incontinence and pain in hands?

Women's Health | Last Active: 3 days ago | Replies (34)

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Profile picture for itiswhatitis @itiswhatitis

@hopeful33250 I have small fiber, large fiber, autonomic, and trigeminal neuralgia. It is the autonomic that is serious and life threatening. I started symptoms in the early 90's and was diagnosed in 2005. I didn't get my type 1 diabetes until 2012 when pancreatitis shut down my pancreas. So it is possible my autoimmune diseases caused the neuropathy. I started with dizziness and then I got digestive issues and struggled for years with those and the other neuropathies causing severe pain. Now, I was living on a feeding tube but had it removed for quality of life sake. I have Cardiac autonomic neuropathy and my blood pressure is extremely unstable. I can go from 220/120 to what it was this morning...58/35. The low blood pressure is the worst and I can barely walk because of it. Exercise is impossible. I have incontinence because I don't feel that i have to go. My legs, from the knees down, are completely numb and have no reflexes anymore. I have no ability to self regulate my body temp...and that is very uncomfortable. The trigeminal neuralgia gives me very severe headaches. I have basically gotten to the point of...what symptoms don't I have. It is extremely hard to live with and I have been disabled since I was 25...I'm 57 now. I am all alone in life so the county set me up with home and nursing care. I have chosen to have a DNR at this point because things are so painful and overwhelming. My neurologist won't treat me anymore and wants me to go to Mayo to inquire about a vagus nerve stimulator. Unfortunately, the transportation is likely impossible. So, there you go...the story of me and I will definitely look up that support group.

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Replies to "@hopeful33250 I have small fiber, large fiber, autonomic, and trigeminal neuralgia. It is the autonomic that..."

@itiswhatitis

This is a complex issue. It must be frustrating to have lived with this for so many years. I'm tagging @johnbishop, who is the mentor in the Neuropathy support group. Perhaps he can connect you with another member, or discussion that might be helpful to you.

@itiswhatitis Hopefully you saw my response to the new discussion you started in the Neuropathy group. Here is the link - https://connect.mayoclinic.org/comment/1406439/