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jpjd59

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Everything posted by jpjd59

  1. jpjd59
    Issie: That's great news! I am soooo happy for you! Pam
  2. jpjd59
    Alex: Yes, my daughter was diagosed with POTS initially. Now the doctors think it is because of some kind of autoimmune issue going on. Is your insurance going to cover the IVIG infusions? (we are awaiting word to see if our insurance will cover it).
  3. jpjd59
    Alex: I'll be keeping my fingers crossed for you! Please let me know how it goes. My daughter is scheduled to start IVIG infusions soon (probably in September).
  4. jpjd59
    My daughter used self-referral for all specialists. If she would have waited to get a referral from her primary care provider, we would still be waiting (because that doctor had never heard of POTS and kept claiming it was just stress and fatigue).
  5. jpjd59
    LM: Sounds like you are finally getting closer to getting an answer. It pays off to be a persistent mom! Hope your son will start feeling better soon. Pam
  6. jpjd59
    I would look for a doctor that specializes in immunology and infectious diseases. They are hard to find but seem to have a better picture of the post-viral issues.
  7. jpjd59
    I think the previous post about requesting your medical records is a good idea. Since you were so out of it in the hospital the records may give you a clearer picture of what happened and what tests/results were done while you were there.
  8. jpjd59
    Looneymom: Why the vaccinations? In my daughter's case, since they have said the problem is related to her immune system, they have advised her not to get vaccinations like the flu vaccine. Did the Dr. say why and what info they were looking for after giving the vaccines?
  9. jpjd59
    Looneymom: I was just wondering how your son was doing. He is so lucky to have such a great mom who is willing and able to put all the time in that is involved with research, questions for doctors, etc. I hope you get some answers soon.
  10. jpjd59
    Gemma: You might try a doctor who is an infectious disease specialist. They might be more familiar with the testing.
  11. jpjd59
    Lynne: Sending positive thoughts your way! Pam
  12. jpjd59
    Welcome! It sounds like quite a journey you have been on already! I know that I have found a lot of helpful information (and support) from this site (my 24 year old daughter was diagnosed with POTS almost 2 years ago). I'm sure you will find this site to be useful too. Hope you get good news about the job.
  13. jpjd59
    Looneymom: My daughter's immunologist ran many blood tests (17 vials of blood!!!). I can't remember everything that was tested but I know the doctor tested for specific viruses (HHV-6 and EBV) and also NK cell function. Of course, they also ran the CBC panel (which always comes back normal). I think it is great that your son has a doctor that is willing to leave no stone unturned. Good luck! Pam
  14. jpjd59
    I hope you get some answers soon!!! Pam
  15. jpjd59
    Katybug: Great idea! Sometimes it is hard to describe an episode to a doctor without them looking at you like you are crazy. A picture (or video) is worth a thousand words!!!! Pam
  16. jpjd59
    No, just time. They usually subside within a few hours.
  17. jpjd59
    looneymom: My daughter has hyperPOTS and she does experience shaking like you described when she is having an especially bad "POTS episode". I have no idea what causes it. It's heartbreaking to watch. Pam
  18. jpjd59
    WOW! Congratulations!!!!
  19. jpjd59
    CarrieJessica: Thanks for posting this!
  20. jpjd59
    If it would allow you to go to school and allow some "normalcy" in your life, I would say that it would be a good thing.
  21. jpjd59
    Kris: This sounds like great news! Hope things continue to get better for you.
  22. jpjd59
    BJD: Stanford also has autonomic function testing now (Dr. Jaradeh is their neuorologist who specializes in POTS).
  23. jpjd59
    Margiebee: I am so sorry that you have to go through this. However, you have come to the right place! You will find so much information and support on this forum. Hope you feel better and get answers soon. Pam
  24. jpjd59
    This is my daughter's worst symptom. She's had everything checked out and the doctors can't figure out why she is having trouble breathing. At least she has doctors now that believe her (some of the doctors at the beginning of all this told her it was just anxiety).
  25. jpjd59
    Jonchel: My 24 year old daughter has been struggling with POTS for 20 months now and nausea and shortness of breath are her most aggravating symptoms. The doctors are not sure what is causing the shortness of breath (they just prescribed oxygen for her hoping that would help when she gets those episodes). It seems to be baffling all of the doctors.
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