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About ANCY

  • Rank
    Advanced Member
  • Birthday 12/04/1991

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

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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
  7. 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.
  8. 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.
  9. 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.
  10. Hello to all and thank you for reading. Over the last couple weeks I have been dealing with back and hip pain which landed me in the ER last Sunday. They did a CT of the lumbar spine and found inflamation/infection on the anterior portion of the L5 vertebrae and surrounding tissues but no pockets of fluid they could biopsy. With this information the ER dr decided to transfer me to their sister hospital where there are better neurosurgeons. I was admitted to ICU because they were concerned about spinal chord involvement. Since I am having new bladder issues as well as significant weakness in the left leg, which I can barely feel right now, however we never got an answer about those. Infectious disease has decided not to treat at this time because he would be treating blind and also this would require a PICC, historically piccs are bad news for me. He is highly suspect that it was seeded during one of the last 2 blood infections, possibly MRSA from December or Psudomonus from February. He said he could treat for both but that would pose a high risk for organ damage. If he treats one and we were wrong than it could make the bacteria more resistant. He's been trying to catch it with blood cultures but not to hopeful since the last 6 were negative. Came home Saturday from the hospital since basically we are just waiting for the infection to get worse to the point they can do a biopsy, and because the MRI made it clear that there's no spinal chord involvment. there is hoping it just resolves on its own but not likely with how things are going. He will repeat the MRI in a month unless more infection symptoms develop, then he'll order it sooner. Obviously there is more limited choices for pain control out of the hospital and mine are more limited because of allergies. What I was sent home with does ok some of the time but getting a lot of break through pain and then end up chasing it... Does anyone have ideas for dealing with pain, other than drugs, especially back pain? Do people with Dysautonomia have a harder time with pain control? Thanks so much for reading, and replying.
  11. Oh yes! I had the same issues, before midodrine and pacemaker. I couldn't do ankle pumps, laying flat, without passing out. They put me on a ton of midodrine and that really seems to help. Pacemaker helped even more, but thwt, of course, is not the answer for Your friend, Amber
  12. What is your neurologist treating with IVIG? I had one very small dose 5 years ago because of a similar situation and the Rhumatologist wasn't comfortable continuing... 2 years ago my neurologist ordered it and I got a full 5day trial, they actually did it in the hospital because they were afraid it would drop my low bp even lower. I had the sa,e symptoms but my neurologist was ok continuing because he's more familiar with the drug. He said it can cause aseptic meningitis which explained my head and neck pain. Took me about a week to feel better from that after completion of treatment. It was absolutely worth it for me though because it made a huge difference for about 3 months. Same thing the second time they did 5 day treatment. They never got me over 40 mls/hr because then the pain would be absolutely intolerable. I used Tylenol and Toradol for the pain also zofran for nausea and benadryl to combat the meningitis. This was enough for me to eak by during the infusions, of course iv benadryl makes me feel like a zombie and not care about anything lol! I never received ivig the way my neurologist wanted... (5 comsecutive days followed by twice a month for 6 months) due to changes with insurance and denial of appeals I can no longer receive ivig. My GI Dr ordered Ig testing 2 weeks ago and found out I have an IgA deficiency. Have not discussed this with my neurologist yet but hoping that maybe with the new diagnosis they will be able to convince the insurance company.
  13. Yes! For me it seems to be made worse by my anemia... have they checked your blood counts?
  14. I've been on midodrine several years. Only have side effects when first starting, restarting, or increasing the dose. Hope yours go away soon!
  15. According to my Drs I fall way out of "normal" for POTS and NCS. That said, I used to pass out 20+ times a day pre pacemaker, not the answer for everyone, but very helpful for me. I have/had trouble with low bp as well as wildly fluctuations in bp and hr. Recently have found that if I push my body way beyond it's limits I will still pass out but I did go for 7 months without passing out once. (Post major Surgery I passed out 1-2 times a day for about a week.) Obviously my situation is a bit different then yours I've had unconscious bp readings as low as 45/20. Something useful I have learned is that while exact numbers are good to know the drop can sometimes affect you more. For example a drop from 150/100 to 110/60 could cause more symptoms than bp staying at 80/60. How quickly my bp and hr were caging also were factors. They could literally get a great bp on me and the next minute I'd be unconscious with crazy low bp. I am much more stable now, the pacemaker leveling off my hr seems to have secondarily leveled off a good bit of my bp fluctuations, at other times it compensates by raising my hr. There are other things that can cause a person to loose consciousness, obviously that would be something to discuss with your dr. Anything that affects the flow of blood/oxygen to the brain could be a factor. Over stimulation of the vagus nerve may also be something to look into.