37 Comments

  1. Ativan is amazing, I totally get the not liking it but it does wonders for nausea but also can help calm the nervous system (not even for emotions but just in general) which can allow for the body to allow other treatments to really take hold

  2. That is wonderful for you! I鈥檓 on the journey of trying to get a diagnosis of connective tissue disorder whatever it may be. Because you have shared your journey coupled with a few others I finally got diagnosed with POTS. There has been a suspicion of possible EDS or Marfan but nothing confirmed yet.
    I recently was in the hospital and they found 18+ Tarlov cysts (cysts on the nerve root filled with spinal fluid) all down my neck and thoracic spine. It is highly unusual to find more than maybe a couple at most! I have an extreme and two part of my spine haven鈥檛 even been scanned yet which is where they are most likely to be! To have such a number is typically indicative of a connective tissue disorder.
    All signs are pointing to that so we shall see where this journey continues to bring me.

  3. Sometimes I think it鈥檚 almost better for the doctors to see us at the worst. I know it鈥檚 hard to get there and to have the energy to get there but sometimes for them to see the worst is the best? If that makes sense. I even feel like putting lip color on my lips because I have no color is almost cheating how I feel for them to examine me. I鈥檓 so glad that you found a good doctor though! Wooohoo 馃帀馃帄馃檹馃徎 Btw, I鈥檓 doing a pseudo happy dance that you found a good doctor鈥 I know how hard they are to come by!

  4. So so happy you鈥檝e found such a good geneticist! It really makes my heart happy when doctors can do what they are meant to and inspire the patients with hope while doing so 馃挌 this seems like a life changer

  5. Info dump: Carnitine is a molecule that allows fats to enter mitochondria to be broken down, which is important b/c your primary energy source is fats when you're resting or lightly exercising!

  6. So glad that you were able to see this Doctor at this time. I can almost see the palpable relief you must be feeling in your body language. And I am sure that in a situation where more knowledge=better quality of life you have hit the motherlode here. How validating and reassuring it must have seemed to you to finally see a Doctor who not only understood your condition but was also ready to take on the challenge of helping you and seem unfazed by it all. God Bless you my dear dear Jaquie.

  7. I'm so happy that you're feeling better. I think I have a mitochondrial disorder as well. I would love to see the same geneticist that you're seeing. How can I contact you privately to get his name and phone #?

  8. That sounds like you had a really rough time. I'm glad the doctor took it in stride and joked about it though. I would rather have a doctor that cracks jokes with me about my health than one who either watches the clock and never really hears me or one who sees me as just a symptom to be treated and seen on my way. I have two fantastic doctors right now who treat me for my back issues (one of them also handles my asthma, feet issues, migraines, thyroid issues and day to day stuff). At the end of the day your doctor needs to treat you like a person first and foremost.

  9. Oh Jaquie, I am so happy for you! How fantastic to find such an excellent doctor!
    As for accidents in hotels, as a former housekeeper at an inn, please don't feel badly about being sick. It is really not a big deal. It was good that you mentioned it to the front desk so that the housekeepers could be prepared, but I have seen way worse in rooms, and definitely not due to illness! 馃槤馃槈

  10. What amazing news!!
    It鈥檚 so important to have a doctor who understands your issues and works with you to find relief in certain areas of your issues where other doctors have failed to help. Almost like 鈥渟eeing a light at the end of the tunnel鈥
    Have a great week

  11. So happy for you. As a person also suffering with Dysautonomia it can be very tough. Now looking for a geneticist for EDS diagnosis. It鈥檚 been such a tough road. But I keep pushing through. So very happy for you.

  12. @chronicallyjaquie I鈥檓 really happy that you went for another opinion it鈥檚 really great you found a really amazing geneticist. I hope that when I my second opinion appointment comes up that the geneticist is as amazing as the one your describing!!

  13. Yes!!! I鈥檓 so very happy you are feeling positive ! I
    Hope one day you will
    Share his info with us .. I am in Tampa as well and would be happy to make the drive ..

  14. I'm so glad you had a good appointment! ^_^ I'm just starting my journey of tracking down geneticists myself and I hope to have such good luck as you did with this guy.

  15. You mentioned bringing your records with you. How often do you order your records from your doctors? I also have a medical binder and have been trying to figure out that "sweet spot" of not ordering them too often but still keeping them current, so I'd love to hear what another spoonie does. I'm so glad you found such a wonderful doctor! 馃檪

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