Darlene

I m am not looking for a dysautonomia diagnosis, but rather the cause. i m not looking to do a tilt either. does anyone have any recommendations of a dr there who will do extensive testing to find the cause?

Has anyone seen Dr. Hostoffer in South Euclid, Ohio?

Are there Dr.'s in Hawaii that are knowledgeable about autonomic dysfunction?

23andMe provides ancestry-related genetic reports and uninterpreted raw genetic data. They no longer offer health-related genetic reports. https://www.23andme.com/ancestry/

Katie Couric's todays episode. They talk a little about POTS. http://katiecouric.com/videos/why-one-hospital-is-turning-to-traditional-chinese-medicine/

has anyone seen robert hostoffer for mcad?

i was dx in 2004. but i think there is more wrong with me than just that. i have symptoms other people with dysautonomia don't complain of... like this systemic burning sensation. i m tired of taking meds to cover up symptoms, if i can find the cause and treat that maybe i could feel better.

has anyone been to cleveland clinic to find there cause of autonomic dysfunction? if so, what is the name of dr or dr's did you see and were they worth seeing?

does anyone get this vibrating pulsating feeling in random parts of your body? been wondering what this is.

Does anyone take alpha lipoic acid? if so, how much?

do anyone here take turmeric? if so, how much? my neurologist who i see for headaches uses this himself & told me to try it. he wrote down how much to take, but i can't find it. http://www.healthdiaries.com/eatthis/20-health-benefits-of-turmeric.html

my 1st mri showed a few white matter lesions periventricular white matter, the second mri showed few white matter lesions periventricular white matter, and my last mri showed minimal T2/FLAIR signal abnormalities within the periventricular white matter. what does minimal mean? doesn't say how many lesions. the impression says "minimal T2/FLAIR signal abnormalities within the periventricular white matter which may represent the sequela of prior demyelination".

all of a sudden i felt funny, i felt shaky inside, my heart was racing... i felt like i did when my sugar gets low. my hands were shaking, and felt a slight burning inside my body. i checked my sugar and it was 82. i took my bp and it was like 124/88, it's normally 104/60. i did not know if this was an adrenaline rush or mast cell episode. i took klonopin 0.5 mg, dye free benadryl 25 mg, and pepcid 40 mg. i have to say i m feeling pretty calm. does anyone else get these episodes.

no, she said it was a diarrhea medicine. i looked it up but dont see anything about diarrhea.

I ate 3 eggs a few hours ago, now I m having belly pain and diarrhea. Bev prescribed me glycopyrrolate for diarrhea. Has anyone taken this? or what do you take that helps?

my ANA was negative until diagnosed with POTS. and i m always in pain. don't understand how i can be healthy my whole life then one day... boom, i m sick.

no, what autoimmune diseases correlate with POTS?

omg, i thought i was the only one. i keep asking on here and on fb if anyone else has these symptoms. 2 months ago immediately after eating i felt nauseous, really weird (light headed maybe) not sure how to explain it, tachycardia, the burning that lasted for about 30 seconds at least 7 waves, the burning was in my arms, back and chest, i peed several times during that episode. anyway, i went to the ER, my bp was 112/32.. they gave me sodium chloride through an IV and then I went home. I felt horrible for a week (i stayed with my mom and dad during this time). when i had gotten home, one night i woke up with high heart rate, feeling weird, burning and my bp was 139/80... which is high for me because my normal bp is 112/58. i ve been having these burning episodes since being diagnosed with dysautonomia. i was wondering, did i have the burning before the lexapro. i don't remember. i ve tried to quit taking lexapro, gradually, but i get real sick... which i was before lexapro and metoprolol. i was put on lexapro to help raise bp and metorpolol to help lower my heart rate. i just seen bev karabin (grubbs partner), i told her about the burning and how no one, not even grubb is trying to figure out what this burning is. grubb thinks it could be mast cell, but bev is doing labs and 24 hr urine (24 hr urine for serum metanephrine test, 5HIAA, and Chromogranin A) to rule out carcinoid and who knows what else. i will keep you posted. and if you want to add me to facebook, feel free https://www.facebook.com/darlene.kinsman

my dr did labs and 24 hr urine for serum metanephrine test, 5HIAA, and Chromogranin A. i take a bete blocker, could this make my test inaccurate. i know not to drink caffeine and eat certain foods. i was given no instructions what and what not to eat, so i looked it up. what can these labs show besides carcinoid and pheochromocytomas?

no, she didn't check anti- diuretic. i was just telling her how i was in the ER 2 months ago with very low bp, nausea, tachycardia, difficulty breathing, systemic burning sensations (immediately after eating), but these episodes can happen anytime. i have also told her sometimes i go months with drinking very little do to nausea, and when i do drink I pee several times a day (fluids don't stay in me). she said maybe you have low blood volume from not drinking enough fluids. she prescribes me vasopressin to help keep the fluid in (hopefully now i will not pee all day and night). she also prescribed me fluids, sodium chloride (IV) once a week as need. she requested labs: serum metanephrine test, 5HIAA, and Chromogranin A.

Has anyone tried vasopression? did it help?

I have had a positive ANA test since 2006. My numbers are getting higher. Just picked up a copy of my most recent labs, my ANA is 1:80 homogeneous pattern. I wonder if this has anything to do with the cause of my dysautonomia or the pain I am always in, or the lesions in my brain.

just seen bev karabin, she put me on vasopressin, and did blood tests checking for carcinoid

Never mind, I called social security this morning. She said the amount will change after they received documentation from my room mate of how much I pay for rent, electric, gas, etc. I guess I shouldn't had worried until I had talked with social security 1st.

yes. when i could no longer drive my daughter to school i signed her up with k12 online public school (Ohio virtual academy). she was in the 6th or 7th grade when i signed her up. she graduated last year and is now in nursing school.