Thank you so much that you share your own experiences and spread knowledge about this serious disease to the world. Our son has been seriously ill from birth, because of severe lack of oxygen during birth. It took 11 years before the last puzzle piece fell into place, and he was diagnosed with generalized Dysautonomia. Absolutely all of the medical problems he has had, finally got a name. I wish you and your family all the best.
@synne64 : you are so kind for sharing your story. It is my wish that we can take that 11 years and reduce it. So that once symptoms occur, your cardiologist is 'ready' and 'waiting'. That is exactly what we need. Thank you for your encouragement, and God Bless All that You Do. LoLv.
I am getting a TTT done soon and I also was diagnosed with Cervical stenosis Im 32. At the same time I was diagnosed with Chiari 1 Malformation. SO hearing you mentioning Headaches, stenosis and TTT really speaks to me ...what is your experience has been with stenosis and post surgery. Please respond , thank you ~Anastasia.
@FlowerRemedy : I have a couple of videos on spinal stenosis; just check under my videos. These are the most popular. Postoperative recovery was hard for me. I had to go on a CPAP machine, except we used orders for BiPAP. Needed that to breathe the 1st night. After that, swallowing was a chore for 3 months...but now I can eat little bits (just got diagnosed with gastroparesis). So what did I do? I went out to eat at my fav restaurant before the surgery. Best thing I ever did. LoLv.
We can lie flat. When we stand up, we don't have 5 min for any one to 'wait' to re-take the blood pressure. When checking for orthostatics, use caution. The patient may simply faint to the floor while you are trying to use a 'protocol' of doing orthostatics. Hope this helps. Together, we are strong!
I know that He is with me in all things, and I just wait to see what the next calling will be. Right now, we have an 8 year-old girl here with cancer...on chemo until March 2011. We need a miracle here. Please join us in prayer for a miracle.
@DysautonomiaMD yes they do! he's healed asthma, GERD, VCD, IBS, internal RND, full body RND/RSD/CRPS overnight! totally took them from me, I was very sick. 8yo is in my prayers, hugging her with my heart!
@FlyinHyy : your prayers are greatly appreciated. Thank you for believing in miracles with us. LoLv to you and yours, and thank you for your encouragement.
@FlyinHyy : Amen & Amen! Check out my latest vid about contacting your State Medical Board......with the FDA giving us our midodrine back, this is our time!
It is my dream that one by one, doctors, nurses, physician assistants, and nurse practitioners will watch this video.
It is also my dream, one that we all share, that each health care provider can leave a Comment: thank you. I do not know much about dysautonomia, and actually,
I never heard of it before now.
I will make it a point to learn more about dysautonomia.
We need hope. This is where we must start. Thank you.
Just for the fun of it, I asked my Cardiologist if there was any connection between the ANS and the heart and he said...none at all...one has nothing to do with the other! (Not verbatim, but close). Now, here I am just an ex- E.M.T. and I knew more about the ANS than he did....what's wrong with this picture?
@Suzanne42 : your being with us makes you part of The Team....we never leave any one behind...so all of you, remember to come to us for help or support. You are no longer alone.
Luv and hugs and warm smiles back to you! It is so nice to have someone that truly UNDERSTANDS...We thank God for you!!! Margaret
@photographer456 : now I know how all the diabetics felt years ago....all the diagnoses looking for a treatment. But God is with us, and we are a determined group of people. LoLv, Dr Margaret
@photographer456 : I need you guys on this one; just pass along to your doctor, whether or not you have dysautonomia. Also, my original vid with Dr. Cannom is an eye-opener for dysautonomia....LoLv, Margaret
@photographer456 : I am only here as a servant of God, to do what I can to help. I realize that the 'MD' brings a higher level of responsibility to the table. Just doing my best....thank you. Without your encouragement, my soul would not sing.
How I wish we knew how to make this video reach more doctors Margaret. You give so much detailed information. I'll be thinking of you when you're having your surgery done and of course praying for all to go well. God Bless you..Jan (and Susan) ♥
@PHANTOMx209y : thanks; I hope that most doctors who never heard of dysautonomia can 'get' that no one likes to faint on the floor. We are not pretending. Perhaps it is a good time to continue one's medical education and learn something new. Hoping several doctors can become regional 'referrals' for dysautonomia, because it is best to go to a doctor that sees more than one patient with dysautonomia. Highest Personal Regards, Dr M
Thank you so much that you share your own experiences and spread knowledge about this serious disease to the world. Our son has been seriously ill from birth, because of severe lack of oxygen during birth. It took 11 years before the last puzzle piece fell into place, and he was diagnosed with generalized Dysautonomia. Absolutely all of the medical problems he has had, finally got a name. I wish you and your family all the best.
synne64 10 months ago
@synne64 : you are so kind for sharing your story. It is my wish that we can take that 11 years and reduce it. So that once symptoms occur, your cardiologist is 'ready' and 'waiting'. That is exactly what we need. Thank you for your encouragement, and God Bless All that You Do. LoLv.
DysautonomiaMD 10 months ago
I am getting a TTT done soon and I also was diagnosed with Cervical stenosis Im 32. At the same time I was diagnosed with Chiari 1 Malformation. SO hearing you mentioning Headaches, stenosis and TTT really speaks to me ...what is your experience has been with stenosis and post surgery. Please respond , thank you ~Anastasia.
FlowerRemedy 10 months ago
@FlowerRemedy : I have a couple of videos on spinal stenosis; just check under my videos. These are the most popular. Postoperative recovery was hard for me. I had to go on a CPAP machine, except we used orders for BiPAP. Needed that to breathe the 1st night. After that, swallowing was a chore for 3 months...but now I can eat little bits (just got diagnosed with gastroparesis). So what did I do? I went out to eat at my fav restaurant before the surgery. Best thing I ever did. LoLv.
DysautonomiaMD 10 months ago
We can lie flat. When we stand up, we don't have 5 min for any one to 'wait' to re-take the blood pressure. When checking for orthostatics, use caution. The patient may simply faint to the floor while you are trying to use a 'protocol' of doing orthostatics. Hope this helps. Together, we are strong!
DysautonomiaMD 1 year ago
May God bless you.
FlyinHyy 1 year ago
@FlyinHyy And may He bless you, too.
I know that He is with me in all things, and I just wait to see what the next calling will be. Right now, we have an 8 year-old girl here with cancer...on chemo until March 2011. We need a miracle here. Please join us in prayer for a miracle.
Miracles still happen. LoLv.
DysautonomiaMD 1 year ago
@DysautonomiaMD yes they do! he's healed asthma, GERD, VCD, IBS, internal RND, full body RND/RSD/CRPS overnight! totally took them from me, I was very sick. 8yo is in my prayers, hugging her with my heart!
FlyinHyy 1 year ago
@FlyinHyy : your prayers are greatly appreciated. Thank you for believing in miracles with us. LoLv to you and yours, and thank you for your encouragement.
DysautonomiaMD 1 year ago
@DysautonomiaMD hugs! we can beat dysautonomia
FlyinHyy 1 year ago
@FlyinHyy : Amen & Amen! Check out my latest vid about contacting your State Medical Board......with the FDA giving us our midodrine back, this is our time!
Highest Personal Regards,
Dr. Margaret
DysautonomiaMD 1 year ago
It is my dream that one by one, doctors, nurses, physician assistants, and nurse practitioners will watch this video.
It is also my dream, one that we all share, that each health care provider can leave a Comment: thank you. I do not know much about dysautonomia, and actually,
I never heard of it before now.
I will make it a point to learn more about dysautonomia.
We need hope. This is where we must start. Thank you.
DysautonomiaMD 1 year ago
thank you
victortine69 1 year ago
Just for the fun of it, I asked my Cardiologist if there was any connection between the ANS and the heart and he said...none at all...one has nothing to do with the other! (Not verbatim, but close). Now, here I am just an ex- E.M.T. and I knew more about the ANS than he did....what's wrong with this picture?
jd450lh 1 year ago
@jd450lh : I am convinced that it will only take a premedical student or two, and a few medical students to bring this matter to another level.
DysautonomiaMD 1 year ago
I hope you can get your health care providers to watch this... Let's try to help the next child get a diagnosis and not lose 15 years of youth!
DysautonomiaMD 1 year ago
Plan to be home on Monday... Thanks to your prayers. LoLv. To All!
DysautonomiaMD 1 year ago
Stopping in to say hello. I UNDERSTAND (as you know from my videos). Thinking about you and sending luv and hugs.
Suzanne42 1 year ago
@Suzanne42 : your being with us makes you part of The Team....we never leave any one behind...so all of you, remember to come to us for help or support. You are no longer alone.
Luv and hugs and warm smiles back to you! It is so nice to have someone that truly UNDERSTANDS...We thank God for you!!! Margaret
DysautonomiaMD 1 year ago
Margrett, Well hope you feel better and great job spreading awareness.
Nicole
photographer456 1 year ago
@photographer456 : now I know how all the diabetics felt years ago....all the diagnoses looking for a treatment. But God is with us, and we are a determined group of people. LoLv, Dr Margaret
DysautonomiaMD 1 year ago
@photographer456 : I need you guys on this one; just pass along to your doctor, whether or not you have dysautonomia. Also, my original vid with Dr. Cannom is an eye-opener for dysautonomia....LoLv, Margaret
DysautonomiaMD 1 year ago
@photographer456 : I am only here as a servant of God, to do what I can to help. I realize that the 'MD' brings a higher level of responsibility to the table. Just doing my best....thank you. Without your encouragement, my soul would not sing.
DysautonomiaMD 1 year ago
How I wish we knew how to make this video reach more doctors Margaret. You give so much detailed information. I'll be thinking of you when you're having your surgery done and of course praying for all to go well. God Bless you..Jan (and Susan) ♥
weeyin1155 1 year ago
@weeyin1155 : I think perhaps the public has to ask their doctor to watch the video. I can see it will pass on by word of mouth. LoLv, Dr M
DysautonomiaMD 1 year ago
I wish all the best for you and hope you do well with the surgery with a quick recovery, God bless you Dr.Maggie.
PHANTOMx209y 1 year ago
@PHANTOMx209y : thanks; I hope that most doctors who never heard of dysautonomia can 'get' that no one likes to faint on the floor. We are not pretending. Perhaps it is a good time to continue one's medical education and learn something new. Hoping several doctors can become regional 'referrals' for dysautonomia, because it is best to go to a doctor that sees more than one patient with dysautonomia. Highest Personal Regards, Dr M
DysautonomiaMD 1 year ago