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Debbie Rose

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About Debbie Rose

  • Rank
    Advanced Member
  • Birthday March 20

Profile Information

  • Gender
    Female
  • Location
    NC
  • Interests
    Birdwatching, my dog my sisters cat ....gardening when temperature allows,in short sessions-I miss horseback Riding

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1,344 profile views
  1. Oh Yes, Internal heat !! I live off of freezer pops !! They cool me down. I am way past "hot flash" time but its like a really bad version of it. And my temp goes up 2 degrees when it happens. My electric bill is crazy this summer Debbie
  2. I had burning of my feet years before I developed the parathesia-numbness, tingling and loss of senstion of bothe my feet and 1/3 up my legs...they tell me it "could" be my dysautonomia but since I have alot of back issues it could be that too. Have not ha EMG to fine tune it. Its a bother but not worth the out of pocket $$ to find out why
  3. Meant to post this in early June Debbie
  4. Hi ALl, Its been a while since I have followed here, been dealing with different medical conditions. I broke my foot and was in a brace and no sooner that came off I developed a UTI and once that was fixed, I developed pneumonia. The Xray that confirmed it showed a possible neoplasm. I had to wait 6 weeks before second xray could be done. That was yesterday-and the "opacity" is still there. So next step is Cat Scan and then a Broncoscopy and biopsy. I have been fortunate to never been in hospital all these years so I needed some advice. Has anyone had any odd reactions to Cat Scan dye/contrast??? How about anesthesia response? Precautions? Warnings? In the past I have had issue with the lidocaines as I absorb them more quickly than others;but otherwise no other issuess before. I would really appreciate any assistance you could provide Thanks Debbie
  5. My CNS has been holding its own as long as I don't do anything stupid. And I was feeling good about my progression of exercising too. I progressed in walking to almost and sometimes a little more than an hour walk. This is on sidewalks so it is uneven and at times there are hills to go up. Then I suddenly get foot pain and it slowly gets worse...go to Ortho and they think its stress fracture and BOOT me!! Just happened to have bone density test scheduled and it comes back with both Osteoporpsis of my thigh and back bone with osteopenia noted in wrist and back! OKAYYYY! Now on fosamax even though I have always had plenty of calcium rich foods in my diet. See Ortho after 5 weeks, wants 2 more weeks in boot....ok... And suddenly I come down with a Raging UTI !!!! For the first time in several decades...so antibiotics and force fluids, vitamin C (already doing) Then finally out of boot, no UTI and things are fine. Get into my compression capri, t-shirt and stockings for my visit with specialist(for CNS) and all goes well but I end up wearing this all day. Body not happy. I am post menapausal ladies so you understand changes that happen in "the nether yayya's" I was miserable for 2 days, go to GYN and besides the obvious there is also a yeast thing going on...get med and off I go and feel better. The Clinic at Duke I go to for my CNS is always very crowded, cardiology, heart transplant, EP studies-you name it. So 3 days later I have scratchy throat and a tickle,goes into cough, congestion, headache, low grade fever of 99.2 (but I run 96.8-97.3) and the cough gets worse, congestion no matter what I try ( within my limitations) So what is going ON!!!!! Do our immune systems tank after a while? This cold started friday and its worse ! I think I now have a sinus infection....so is this something I need to look into? Has this happened to others? I would appreciate some knowledge and advise, please
  6. Somewhere in my memory of anatomy I seem to recall that it has to do with the position of the major blood vessels going to and from the different heart chambers and that is is quite normal. If my memory serves...hope that helps Debbie
  7. Brokenlittleteapot- Welcome to our group! You will find lots of help and info from a lot of friendly people. I too have NCS and it is a tricky condition but each of us experiences it a little bit different which makes it so much harder to manage> But hopefully you will find some answers and friends along the way
  8. Welcome!! It sounds like you are doing alot of the right things. Work slowly at building up stamina. I started at 10 minutes every other days and built from there. It took me almost a year to build up to 50 minutes of slow walking 5 out of 7 days, but it has helped me feel better. But I also follow a regimen of fluid intake, salt intake, medications, spacing out my activities-limiting the times and giving my body plenty of rest between active moments. Everyone experiences dysautomonias differently but you have found the perfect place to connect and find friends and facts. Hope this helps
  9. Blizzard-MCAS !! I just reviewed the web site you tagged- WOW!! My first "episode" was being stuck at a baseball game in early May with temp in the 70's but full sun leading to a reaction I thought was heat exhaustion and had to go to MD-She thought it was MS and thus started my research....5 years later TTT positive for NCS but alot of my symptoms could be MCAS as well. So an Allergist is who I should go to for diagnosis??
  10. The first 2 years after the initial flare and thru the diagnosis of my dysautonomia-NCS, I have had the breathing issues you describe. I still do to this day as my meds start to wear off or in the eve when I am tired. Its a common part of dysautonomia for some of us. I take deep breaths to compensate and do a bit more yawning-especially once I am in bed and lying down. I have sleep apnea and so wear a CPAP which was difficult to get used to as well. Sorry you are going through so much, I hope this info helps
  11. Blizzard-I take a high dose of vitamin D-5,000 one day and 10,000 opposite days. I have been doing that for years and my range fluctuates between 38-58 on my tests-which is mid-range. I started Calcium with Mag+ and Zinc in January. p8d-MY immune system hasn't been challenged lately because I rarely go out. However in March I was feeling better on some days and ran errands, which caused exposure to others plus dragged my immune system down-live and learn Pistol- Sometimes I am so concentrated on the physical, I forget the emotional. I have been under tremendous stress lately trying to re-submit forms to continue my LTD from my employer while waiting for a date on my SSDI court appearance. That could have drained my immune system right there, thanks for the reminder Always-thanks for the well wishes, they do help
  12. sorry-so foggy-NCS is my condition
  13. My CNS has been holding its own as long as I don't do anything stupid. And I was feeling good about my progression of exercising too. I progressed in walking to almost and sometimes a little more than an hour walk. This is on sidewalks so it is uneven and at times there are hills to go up. Then I suddenly get foot pain and it slowly gets worse...go to Ortho and they think its stress fracture and BOOT me!! Just happened to have bone density test scheduled and it comes back with both Osteoporpsis of my thigh and back bone with osteopenia noted in wrist and back! OKAYYYY! Now on fosamax even though I have always had plenty of calcium rich foods in my diet. See Ortho after 5 weeks, wants 2 more weeks in boot....ok... And suddenly I come down with a Raging UTI !!!! For the first time in several decades...so antibiotics and force fluids, vitamin C (already doing) Then finally out of boot, no UTI and things are fine. Get into my compression capri, t-shirt and stockings for my visit with specialist(for CNS) and all goes well but I end up wearing this all day. Body not happy. I am post menapausal ladies so you understand changes that happen in "the nether yayya's" I was miserable for 2 days, go to GYN and besides the obvious there is also a yeast thing going on...get med and off I go and feel better. The Clinic at Duke I go to for my CNS is always very crowded, cardiology, heart transplant, EP studies-you name it. So 3 days later I have scratchy throat and a tickle,goes into cough, congestion, headache, low grade fever of 99.2 (but I run 96.8-97.3) and the cough gets worse, congestion no matter what I try ( within my limitations) So what is going ON!!!!! Do our immune systems tank after a while? This cold started friday and its worse ! I think I now have a sinus infection....so is this something I need to look into? Has this happened to others? I would appreciate some knowledge and advise, please
  14. I was recently diagnosed with osteopenia and osteoporosis which surprised me because I drink milk and eat cheese and yogurt almost daily and am on supplements. They say long term use of steroids can cause it. I was on fludrocortisone for 3 years before switching to midrodrine, could that be a cause???
  15. My Brady was occurring before my POTS diagnosis (actually NCS) and that was part of why they had a hard time diagnosing. At rest I am 45-55, so my HR of 120 was HORRIBLE for me considering my resting, and my BP would drop too. It took a tilt table test to define it. If I go from standing to lying flat my heart actually pauses and I briefly feel like I am passing out. But the body is a remarkable thing and has alot of "safety" built in. Not that I go from standing to lying abruptly at all, now that I experienced it, but sometimes I forget. So I still have my symptoms, I am on midodrine now-which helps. Was on fludrocortisone but its effectiveness wore off. But beta blockers lower my BP (tried it decades ago for migraines) so I stay clear. I have clonazepam for anxiety/chest pain
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