So glad for you Jackie!!! It all seems to be pointing in the right direction for you!! God bless this Dr and may guide him through your treatmemt
I'm so happy for you! He sounds amazing!! Yeah everyone's journey is unique!
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
Terrific news!! I'm praying this doctor can really help you. Sounds like you're off to a great start. 💙💚❤💛🧡💜
How did you first get diagnosed with Mito? I’m so glad you have a great Dr. who can help treat it better.
Just wanted to say that you look alot better. I know that you don't feel better. I understand what it is to be cronicly ill.
Keep going ❤️
That is wonderful for you! I’m 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’t 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.
so glad to see you feeling better. because a happy jaquie makes me happy. just something about that smile. 👍😀❤️💪🙏👏
Sometimes I think it’s almost better for the doctors to see us at the worst. I know it’s 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’m so glad that you found a good doctor though! Wooohoo 🎉🎊🙏🏻 Btw, I’m doing a pseudo happy dance that you found a good doctor— I know how hard they are to come by!
SO happy for you!!!! This is really great news!
That is amazing to find a dr who you dont have explain your issues to. I know it is so annoying to have to explain eds to and watch them google it !!
I'm soooooooo happy for you Jaquie!!! Yea, finally a fe answers! Blessings to you. Love, Grannie Annie from Maine
So so happy you’ve 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 💚 this seems like a life changer
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!
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.
Yay so happy for you!
Have you met or communicated with the other person in this world who has this mutation? Would you like to communicate with them or meet them?
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 #?
I'm so happy for you.
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.
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! 😝😉
What amazing news!! It’s 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 “seeing a light at the end of the tunnel” Have a great week
Wishing you long term relief. You deserve it.
Wow Jaquie, he sounds awesome!
So happy your appointment went well!!!
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’s been such a tough road. But I keep pushing through. So very happy for you.
@chronicallyjaquie I’m really happy that you went for another opinion it’s 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!!
Ativan has been a godsend for my flares – I hate it too, but when the pukes won’t stop, it’s huge help!
Hugs
Yes!!! I’m 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 ..
Happy for you!!.. You're looking so much better and relaxed already!!..
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.
Good doctors make ALL the difference! I’m so happy for you ❤️
So glad for you Jackie!!! It all seems to be pointing in the right direction for you!! God bless this Dr and may guide him through your treatmemt
I'm so happy for you! He sounds amazing!! Yeah everyone's journey is unique!
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
Terrific news!! I'm praying this doctor can really help you. Sounds like you're off to a great start.
💙💚❤💛🧡💜
How did you first get diagnosed with Mito? I’m so glad you have a great Dr. who can help treat it better.
Just wanted to say that you look alot better. I know that you don't feel better. I understand what it is to be cronicly ill.
Keep going ❤️
That is wonderful for you! I’m 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’t 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.
so glad to see you feeling better. because a happy jaquie makes me happy. just something about that smile. 👍😀❤️💪🙏👏
Sometimes I think it’s almost better for the doctors to see us at the worst. I know it’s 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’m so glad that you found a good doctor though! Wooohoo 🎉🎊🙏🏻 Btw, I’m doing a pseudo happy dance that you found a good doctor— I know how hard they are to come by!
SO happy for you!!!! This is really great news!
That is amazing to find a dr who you dont have explain your issues to. I know it is so annoying to have to explain eds to and watch them google it !!
I'm soooooooo happy for you Jaquie!!! Yea, finally a fe answers! Blessings to you. Love, Grannie Annie from Maine
So so happy you’ve 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 💚 this seems like a life changer
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!
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.
Yay so happy for you!
Have you met or communicated with the other person in this world who has this mutation? Would you like to communicate with them or meet them?
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 #?
I'm so happy for you.
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.
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! 😝😉
What amazing news!!
It’s 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 “seeing a light at the end of the tunnel”
Have a great week
Wishing you long term relief. You deserve it.
Wow Jaquie, he sounds awesome!
So happy your appointment went well!!!
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’s been such a tough road. But I keep pushing through. So very happy for you.
@chronicallyjaquie I’m really happy that you went for another opinion it’s 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!!
Ativan has been a godsend for my flares – I hate it too, but when the pukes won’t stop, it’s huge help!
Hugs
Yes!!! I’m 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 ..
Happy for you!!.. You're looking so much better and relaxed already!!..
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.
Good doctors make ALL the difference! I’m so happy for you ❤️