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Susan330Participant
I’m the opposite. Ha… I’m 24 and was diagnosed with Autonomic Dysfunction a few years ago after a positive tilt table and other symptoms I was having. Usually it stays pretty controlled with Florinef. I’ve tried compression stockings but can’t stand to wear them… I’ve also tried Midodrine but couldn’t handle taking it due to supine hypertension.
Recently, I had a nerve conduction test done which shows severe neuropathy, worse on my left but not good at all on the right either. I’m awaiting a follow up appointment with my neurologist, but I’m highly suspecting Autonomic Neuropathy is the problem, especially since I don’t have Diabetes Mellitus. I also have the other symptoms involved such as urinary retention, postural tachycardia and vasovagal syncope, etc etc… But I am wondering if there’s any way to prevent or treat the neuropathy to prevent further damage? And if it’s very common to get it. I also have Lupus which I know can cause problems, too. Just curious. Thanks 🙂
Susan330ParticipantI do have those symptoms… Is there any test that I would need to do? MRI, maybe? Or do they usually base it off of symptoms?
Thanks 🙂
SusanSusan330ParticipantDr. Diana,
I have had a positive tilt table in the past. My BP dropped to 52/30 but I was still conscious. I always lose my vision and my hearing but I’m still able to feel my surroundings and talk a little. But, I do not remember if I had trouble with my heart rate on the tilt table. My heart rate stays about 140-150’s with minimal exertion. I also have SVT and my HR will jump up to 260. I have 90% of the symptoms of Dysautonomia, but I can’t find any of my specialists to really help treat any of it. (I see rheumatology, neurology, cardiology, electrophysiology, nephrology, urology, gastroenterology, internal medicine, and allergy specialist). They always suggest beta blockers that I cannot tolerate. I see that you speak a lot of Diamox. Does it treat the dysautonomia directly? I don’t really understand how it works.
Thanks so much.
Susan -
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