Neuropathy Community Group

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Brain & Nervous System
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My brother needs help

stenvikm
stenvikm
Hello I am in need of some advice for my brother for the past few years( at least 4) has been in so much pain and so much faitgue. I my self has RA,lupus,graves disease,neuropathy,galcuma and are mother has Fibromialge. Anyway he has gone to several dr here in alaska but nobody wants to do any test on him , they said he has neuropathy and there nothing more they can do. I dont beleave that, they will give him pain meds I think It starts with trumadle or something like that. He can be in so much pain he miss work and gets very depressed about it. I made him a dr appt in seattle next month with rheumatolist that is very high in this profession. My heart breaks for him because he said theres nothing they can do . The bottom of his feet are turning deformed and he has a hard time walking. Has anybody else experience any of these.. Than you... Marie
DarkSON
DarkSON
Hi stenvikm. It is really a very horrible disease this neuropathy. I see my neurologist once a year and sometimes in between(usually when I am seeking attention). In what your brother says is more truth than most can bare to relate. Generally when a person struggles with a neuropathy there isnt much the medical profession can offer but pain management. Your brother really needs to take control of it and find avenues around it while still pursuing some enjoyment out of life. Dont let the neuropathy stop you from enjoying life. This is very important.. Recently I went to OHSU and they did some pretty routine tests to check my nervous sytems reactions to electrical stimulation. I think it was called an EEG test. I had had this test run before but never with the satisfaction of having them explain what was actually going on with my nerves. After the test the head doctor and his assistant sat down with me and pretty much told me I was going to get worse, and worse. That my nerve signals were fine going one way but on the way back it was like skipping a stone across a pond. I am very lucky for I can still live an active lifestyle. I really dont have a disability, cept for the vibration I feel all day long and then the pains I feel when I lay down at night, anxiety, tinnitus, also the lack of emotion to any object. My neuro has me on lyrica(300mg daily), and then vicodin to help me relax at night to fall asleep. My GP switched that over to a muscle relaxant cause the side effects of the vicodin are not good.
I hope that the tests for your brother go well. Again try and find ways around things. I found a job that I work from home, its not perfect yet cause I just started but we will see where it goes.
I hope this helps,

Pat