bamagirl Posted November 9, 2008 Report Share Posted November 9, 2008 For those diagnosed with progressive dysautonomia or nerve damage, how and what tests determined that? And if so, is it slowly progressive or fairly quick? What is the absolute worst case scenario? I ask because I have dysautonomia with small fiber neuropathy. I have nerve damage in my feet. I don't faint, and all of my autonomic reflex tests are normal except for no sweating on my feet. My main problem is adrenaline surges over and over, migraines(regular and newly ocular), and very low bp and feeling "drunk" 24 hours a day. I wonder since I have nerve damage in my feet that my dysautonomia is progressive. Any information helps. Thanks!!! Quote Link to comment Share on other sites More sharing options...
Guest Sandy Sims Posted November 10, 2008 Report Share Posted November 10, 2008 For those diagnosed with progressive dysautonomia or nerve damage, how and what tests determined that? And if so, is it slowly progressive or fairly quick? What is the absolute worst case scenario? I ask because I have dysautonomia with small fiber neuropathy. I have nerve damage in my feet. I don't faint, and all of my autonomic reflex tests are normal except for no sweating on my feet. My main problem is adrenaline surges over and over, migraines(regular and newly ocular), and very low bp and feeling "drunk" 24 hours a day. I wonder since I have nerve damage in my feet that my dysautonomia is progressive. Any information helps. Thanks!!!Nerve damage in your feet?Adrenal surges?Feeling drunk all day?Have you ever had a glucose tolerance test? Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 10, 2008 Report Share Posted November 10, 2008 the fact that you have nerve damage in your feet does NOT in ANY way mean that your dysautonomia/ autonomic neuropathy is progressive. and as for worst case scenario, for what it's worth i've been told that i'm it. at least in the realm of someone my age (28) as opposed to a middle-aged person with MSA/ shy-drager. that said i'm a bit "better" now, at least functionally, that i was for a good year & a half (about a year & a half ago), at which point i very seriously was not expected to live another year. my prognosis is still poor & without the machines i'm attached to almost 24/7 i wouldn't live more than a few weeks at most. for more of my story here's my profile in the summer 2007 newsletter:http://www.dinet.org/summer07/sum07news3.htm.i have seen & been discussed & studied by many of the top autonomic specialists in the country & been told that collectively they have seen less than a handful of people with my severity of autonomic neuropathy/ failure/ degeneration/ etc. so that's what i'm basing my answer on (re: my being the "worst case scenario). as i said though i've sort of surprised everyone by my stubbornness in terms of the fact that i'm not only "just" still here but functioning at a better place than anyone ever thought i would be ever again. "better" is all relative & most people would consider my level of functioning absolutely horrible, but compared to being bedridden, living in hospitals & nursing homes most of the time, & needing ambulance transport to get me to a doctor's appointment, being able to get out of the house a few times a week in a good week is HUGE & not something i dare to not appreciate.but anyway.....based on what you've shared you have no reason to worry about your situation being progressive. many, if not most, people with autonomic neuropathy have some sensory issues similar to yours. that doesn't mean they aren't a huge pain but they certainly aren't indicative of a particularly poor or progressive prognosis. even more reassuring of that in your case is the fact that your other autonomic testing is all fairly okay. in anyone (me included) with a very progressive situation most if not all autonomic testing is dramatically abnormal, so for multiple reasons i'd say you can rest easy!hope this helps, melissa Quote Link to comment Share on other sites More sharing options...
bamagirl Posted November 10, 2008 Author Report Share Posted November 10, 2008 Sunfish,You are an inspiration to me and I'm sure-many others. I truly believe with your attitude that you WILL get better in some time. I will read your story and send out a prayer to you every night. Take care and I hope you have a good day. Quote Link to comment Share on other sites More sharing options...
bamagirl Posted November 10, 2008 Author Report Share Posted November 10, 2008 (edited) Have you ever had a glucose tolerance test? No, but I'm going to ask for one at the doc today.Thank you- Edited November 10, 2008 by Sunfish correct quote inserted Quote Link to comment Share on other sites More sharing options...
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