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About ANCY

  • Rank
    Advanced Member
  • Birthday 12/04/1991

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  • Gender
  • Location
    Peyton Co
  • Interests
    The Bible, Church, playing musical instruments,Cooking, Research

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  1. Sounds very similar to my first TTT while I did not pass out my blood pressure dropped down to 70s/50s and the NP who was doing the test was very surprised that I didn't pass out, he did end the test early because they already had enough information for a diagnosis and he didnt want me to pass out. My heart rate had also gone from 90s sitting to 1 30s during the tilt, I had periodic drops in heart rate but it would return to the 1 30s. This is very diffrent from my current status as I've had major shifts in symptoms. My team does not feel I need another TTT because my condition is very obvious for POTS/NCS and I now have a pacemaker so they know what my heart is doing 100% of the time, at least for hr and rythym.
  2. I'm so sorry you had to go through all that, made me cry to hear how awful they treated you. Some members of the medical field need to wake up and pay attention, especially when dealing with an unfamiliar condition. I hope the next time around they will treat you better. Did you let the staff know you were dissatisfied? I don't know if you have them, but we (my mom and I) will speak with a patient advocate when I'm not getting proper care. I went through major surgery and was left overnight with no pain meds from 5 pm to 6 am so I certainly know how it is to feel helpless and in so much pain, I'm sorry that's what happened to you. and the Will they not put you under full anesthesia for the gallbladder? Under full anesthesia there is a Dr completely devoted to watching vital signs and making sure you're safe. I have had conscious sedation and full anesthesia on many occasions and they are two very diffrent things. Just a thought... before my mom and I had our gallbladders out we both found it easier to chew on ice and try popsicles to maintain hydration and give a little sugar boost. Will be praying g for you and hope you feel better soon!
  3. Although there's not a direct conection between the two my neurologist believes my dysautonomia was brought on by an autoimmune problem. recently found out I have an IgA deficiency and my IgG is twice what it should be, which fits his theory. Although there is no treatment for my problem, it's nice to know why I'm so prone to infections.
  4. I wouldn't get to worked up over it till you talk to someone. On many occasions I've had hospitals send me large bills for hospital stays and surgeries, come to find out they all together skipped billing insurance, despite having verified all my info beforehand.
  5. Update: The biopsy did not grow anything but did show inflamation. ID drs got together and discussed my case and came to an agreement on what they think happened. They believe the blood infection in December seeded the osteomyelitis and it was either fully treated, or partially treated by the antibiotics that were used to treat the blood infection in February. So the plan has been to wait and rescan every 6-8 weeks to see weather things are getting worse or improving. Forecasting several more months of pain and inflamation of the bone, maybe even a year. Will have another MRI Tuesday and depending on that maybe a biopsy if necessary. Because of my history they will not treat unless they know exactly which germ they are treating. Because of the duration of pain my PCP decided it would be best to get a pain management dr involved. He has switched me to diffrent meds which have been more effective but it would seem that they are having an unusual effect on my blood pressure. Has anyone ever had high blood pressure from moraphine or tizanidine? (My normal, with midodrine and florinef, is about 110/60, now running around 140/95 without taking the midodrine.) will see cardiologist on Tuesday but was wondering if anyone else has experienced this? Thanks for reading and replying!
  6. I find abdominal compression helpful when I Can tolerate it. Currently using a back brace (because of Osteomyolitis) and have found it helpful in relief of some symptoms because of the pressure on my abdomen. Has also helped some with the daily bloating I have from gastroperesis. Hope you find a what works for you!
  7. Thank you all for your compassion. I have not seen a neurosurgeon however I've been seeing a different infectious disease dr in the hospital who has a harder time just leaving me to get worse. In her opinion better to identify now for easier treatment, my aunt has been dealing with osteomyelitis for months so can be a long road... they are also wondering if somehow I have a compression fracture. Anyway... she asked the Radiologists to put their heads together and see if they could come up with a way to do the biopsy. They came up with a way to do it under CT guidance and got it done yesterday. Will not have results for another 4-5 days but since the antibiotics can be done outpatient they don't have to keep me till then. Supposed to get the foley out this morning and most likely will send me home today as long as the pain management I'm on continues to work.
  8. In the hospital again, should see a pain dr today to find a regimen that works for pain control. Once again MRI shows nothing that they can biopsy, although now there is involvement of L4 and L5.
  9. Dizzy Girls- thank you for sharing your daughter's experience! Mom to Giulana- thank you for the well wishes! Issie- thank you so much for all that information! Reminds me some of my mom's problems too. Sorry you had to go through all that. My issue is inability to pee... I was able to get in with my PCP Thursday and he wrote orders to straight cath, he believes that to be less risky than putting a foley in. Yesterday went 17 hours without urinating and by the time the nurse got here my bladder was very full and felt like I was having period cramps. I have been on flexoral for the back pain. My PCP is also putting in for me to see a neurosurgeon because of so many neuro like symptoms with bladder and bowel troubles as well as weekness in my legs and loss of feeling below my knees.
  10. I have had both orthostatic hypotension and random drops. I can't tell you what they're from, my Drs never figured it out completel although they do believe it is part of the way i manifest my dysautonomia.. When I got my pacemaker most of the sudden drops were stopped, or at least didn't pass out because of them any more.
  11. Thanks Issie what is a bladder suspension? They are talking about putting a foley in for a temporary solution. the Geneticists we saw didn't want to label EDS but he told us if we went to another Geneticists they would say EDS.
  12. So just found out infectious disease thinks it will take 2-3 months to repeat scans and be able to start treating the infection... unless i get sepsis... so I was wondering if ANY ONE has any more ideas for long term, I certainly don't want to be taking narcotics that long! Also anyone deal with bladder retention? Infectious disease is saying it's my dysautonomia not my back so maybe a more permanent issue... Thanks! Amber
  13. Thanks Issue I totally get the morphine like water, I have some like that... Do you use essential oils or a tea for those? Heat seems to be helping more than ice today at least. Hope your neck feels better qiickly.
  14. Psalm 23- thanks! I'll look into the lidocaine patches, I have used them in the past, just not whIle also using fentynal patches. Sorry you have to deal with back pain.
  15. Katybug - thank you for all the ideas! Can't do the tens with my pacemaker but I think I will try the others. Have been doing heat but haven't tried ice. Thanks! Dizzygirls - thanks for praying, it has been a rough couple of months for sure by God's grace I've made it through this far. We do the same thing with rice and socks. We use my dad's old military socks, some of which are a little thread bare on the heals. Then I end up leaving a trail of rice lol! I use kryogenic ice packs, nice because they stay cold longer. Just another question... they have me using a fentynal patch that is helpful for about 36 supposed to be 72. Ideas? Waiting to hear back from my dr, the home care nurse called to see if they would change the order so we can change it more frequently.