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Everything posted by Darlene

  1. my parents put my grandma is a nursing home yesterday, my heart is broke. i hope she can leave if thats what she wants. she is competent, but i have a feeling my parents are telling them otherwise to gain control over her. her 1st day she had to pee, and no one came for a while. i want to take her home with me, but don't know how to go about it. i did go to probate court to see if my parents had her declared incompetent, they looked in the computer and did not see any record of it. i m hurting bad, i want her with me, where do i start?
  2. can a person on ssi be a caregiver?
  3. Has anyone had the blood volume test at CC? What is it like?
  4. Has anyone seen Dr. Hsieh at the Cleveland Clinic?
  5. I was put on lexapro to help raise my bp, and to help keep me from passing out. I would be in worse health than I am now without it.
  6. And I wasnt hyperventilating. I was at CC seeing Dr. Browning. I felt calm. Bp was 102/60, pulse 62 & respiration 12. My blood work was done right after my appontment. I read when your CO2 is low "This will lead to the blood vessels of the body constricting, thus reducing the flow of blood in the body." Sometimes I get this burning sensation inside my body. I wonder if my blood vessels are constricting when this happens. Thats why I went to CC, to find out what's causing this burning sensation inside my arms and back (definitely not feeling well when this is happening).
  7. I got some of my lab results back from the Cleveland Clinic. My glucose, CO2, and potassium is low. I wonder what causes my CO2 to be low. And what can I do to bring my CO2 up?
  8. dr. browing and her NP spent almost 2 hours with me. she had me do labs before i left: ganglionic nachr antibody, hgb a1c, basic metabolic panel, cbc + platelet, iron and tibc, protein electrophoresis with interp, protein elect rnd ur with interp. i go back august the 25th for more testing: tilt table test, qsart, neuro cardio autonomic reflex w/wo tilt and i will be seeing a dr. that specializes in mastocytosis. for those of you who have gone through the qsart and cardiovascular autonomic reflex test at the cleveland clinic, what is it like? one girl who went through the cardiovascular autonomic reflex test said they just do step 1. I hope cause the other steps sounds scary. and she said the qsart is like bee stings. http://my.clevelandclinic.org/heart/diagnostics-testing/cardiovascular-autonomic-reflex-test.aspx
  9. my ana is 1:80 homogenous pattern and my DNA (ds) AB is 8. my dr. is referring me to a rheumatologist to check for lupus. my scl 70, sed rate and c reactive protein is normal. i ve been down this road before and was told "i don't think it's lupus". i ve had to lyme tests. elisa positive and western blot negative. i was told "i don't think you have lyme", i have brain lesions, i was told "i don't think you have ms". i wonder the dr will ever figure out what this systemic burning sensation is.
  10. i went to the hospital when it was happening and my bp was 112/34 and another time 118/47. my normal bp is 100/60. one time during an episode my bp went to 128/76. the episode lasts 5 to 20 minutes. but i will feel horrible for several days after the episode. i take 2 benadryls when this happens then i m ok. but maybe i d be ok if i didnt take the benadryl.
  11. when i have an episode, i will feel this burning sensation inside my arms and back, i m feeling really weird when this is happening (like lack of blood flow to my upper body), i will feel like i m going to puke, sometimes i feel like i m not getting enough oxygen, i can feel my sphincter muscle and urethra contracting and i will go to the bathroom several times during the episode. my bp sometimes drops. i take 2 benadryls and it usually goes away, but i will be sick for several days after the episode. what causes the sphincter and urethra muscles to contract?
  12. my daughter had her vaccines last year, and has had different symptoms since. but how can i prove it.
  13. I am going to Cleveland Clinic in a few weeks to see a nurse practitioner in the neuromuscular department. I have these episodes where I don't feel right (feels like lack of blood flow to the upper half of my body) I feel nauseous, sometimes it feels like i m not getting enough oxygen, I feel this burning sensation inside my body (upper half), I feel contractions in my bowels and bladder and go to the bathroom several times during an episode. Sometimes my bp is low when this happens, sometimes my bp is higher than it normally is. The episode lasts anywhere from 10 minutes to 30 minutes. What diseases or tests should I ask her to check into.
  14. My FOLATE is 27.6 Range is: 3.1-17.5 - ng/mL This wouldn't be causing my dysautonomia symptoms would it?
  15. some of my labs are back, b12 is normal and folate is high. i know the high folate levels are not caused from getting to much of it in my diet because i eat very little, so little you would think i would be deficient. is high folate a big deal or does anyone know what can cause this?
  16. Where is the most affordable motel near Cleveland Clinic?
  17. i don't know, this is who my family dr. set me up with. is a nurse practitioner a waste of time? can i ask her to set me up with a neurologist? i m don't want to do the ttt, already have a dysautonomia diagnosis. just wanting to find the cause of this burning sensation i get inside my body.
  18. has anyone seen Ashley Schnackenberg at cleveland clinic?
  19. sometimes i get this feeling of icy hot being rubbed on the upper half of my body. anyone know what this is?
  20. wednesday i was in adrian w/ my daughter. i ate a sandwhich at wendys (bad food i know), then went to walmart. when i got out of the car i felt like i wasn't getting enough oxygen, but the air felt thick that day. once i got inside i felt this systemic burning sensation in my body. we left, and i wasn't feeling right and just felt like i couldn't get enough oxygen. i went to the hospital in adrian (not my hospital). my bp was 110/47. my pulse ox was 100 and no oxygen was given, but i sure wish they could do something so i don't feel like i m not getting enough oxygen (horrible feeling). they did no blood work, ekg, or any tests. just gave me an IV (1 L saline), and sent me home. when i left my bp was 118/50. i still wasn't feeling good, and havent felt good good that day. just a few minutes ago i was feeling lightheaded, i checked my bp and it was 104/73 (took 2 thermotabs today). oh, during these episodes i can feel my bowel and bladder contracting, then i will go number 1 and 2 several times during an episode (diarrhea). i wish i knew what caused the bowel and bladder contractions and the need to go to the bathroom several times during an episode. my mouth will also shake, like a person does when they go out in the cold and i have this horrible feeling inside my body (like my blood is poisoned). and the burning sensation like my blood vessel are on fire, wish i knew what that was to. i don't know how much longer i can feel this way.
  21. I take Lexapro to help raise my BP, no side effects except weight gain.
  22. Who is the neurologist you see that you were happy with initial testing and what kind of testing did they do? I don't care about follow up, if I have a problem I can see grubb or bev. The labs I have include basic labs, carcinoid syndrome and lyme. My ANA has been positive the past few times and the numbers keep getting higher, but have not been doagnosed with an autoimmune disease. Grubb and Bev suspect MCAD, but have had no testing to confirm this. I believe there is a cause of my dysautonomia and if I could find the cause, I could get better treatment. I m looking to treat the cause and not cover up the symptoms like I have been. I can deal with a lot, but I can't deal with this burning sensation I get inside my body, most of the time when this happens I am having difficulty breathing. one night about 6 months ago i went to the er and my bp was 113/34. i m wondering if my body doesnt sense an emergency and my adrenal glands secrete epinephrine to raise my bp. so maybe the burning in an adrenaline surge or lack of blood flow to the areas inside my body thats burning. I m feeling like death when this happens. then a week or two ago my daughter, cousin and I went to out to eat (Mexican food), then we took a walk at the park... we walked up this hill (and i can't walk up stairs or hills), my heart started racing, i was having difficulty breathing, and I felt this systemic burning sensation. i stood still for like 5 minutes or so until this episode passed. we finished walking and we got into the car to come home, a few minutes after i had been in the car it happened again, except this time my vision was funny, my heart started to race, i felt like i was going to puke, i was having difficulty breathing, it felt like my bowls and bladder was contraction (sometimes i go number 1 and 2 several times during an episode). when i do get these episodes i take benadryl and klonopin.
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