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Waiting For Confirmed Diagnosis, No Meds, Need Help Managing Symptoms


lumpchp

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So far, only diagnosis has been from neurologist at er as "failing ANS"

Gp said I have to see specialist to get confirmed and accurate diagnosis. In the mean time, what can I do to ease symptoms? Here its what I experience

orthostatic hypotension- sometimes to the point of syncope

Supine hypertension

Heart rate increases with minimal activity- BAD when I stand up

Vagal response such as eating, going to bathroom, causes immediate svt arrythmia

Bladder/bowel "issues"

EXTREME fatigue, weakness, overall crappy feeling

Temperature regulation issues, hands, and feet turn colors, go completely numb and cold, even in hot weather. Also cant tolerate heat

Alot of headaches

Not prego, but have not had a cycle for months- I do have endo, and believe its showing ugly face again.

Chronic kidney stones

Major back/body pain- all the time

Did I forget any??

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Thanks, I have been told about the water/salt increases, and am trying this. I guess I should invest in some gatorade, getting so sick of plain water...

does anyone have experience with acupuncture? Gp wants to try this, I'm apprehensive of anything that will mess with my nerves right now.

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Oh yeah, forgot one thing, I have had RSD/CRPS (resolved) in the past following 2 seperate injuries, on my left ankle, and my left elbow (years apart) resolved after series of sympathetic nerve blocks, and LOTS of pt

Also, to my gp's amazement, i have had lab confirmed shingles 4 times in 4 years, 2 locations...

It seems my ans has been "off" for a long time.

It's amazing everything that can go out of whack with a "defective" nervous system

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Try SmartWater also, it has electrolytes but none of the sugar in gatorade that might upset your stomach. I asked a similar question about acupuncture, and I know it is good for anxiety so i don't think it will negatively be messing with your nerves, but I don't know if it will do anything for dysautonomia.

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