Hi Dear engodo2525, I assumed perhaps you did believe in God because your name has the letters g'o'd' in them...kinda unique, nice.
Nice to meet another scientist; and I can tell you that I have been to the door of heaven, when I died in my first ER visit.
Wrote a book on it.
If you are interested, can send you a book. Otherwise, you can follow the author's readings, as I have been reading it on my channel. I know that not every one can read a book.....me included...LOLove, Margaret
Lol Engodo was the name of a virtual pet i adoped online when i was little. Random letters selected by computer. It was a shelter animal.
Well i have not died unless my birth counts but i have come close enough to not want to.
Do you know why you cant read books? I have that issue i can read online but with books i usually get two pages and go limp then convulse due to the hyperadrenic POTS though as of now i can read again most days.
Well after the first FFP my Ehlers sorta just totally cured itself, though it came back, currently it is here on and off depending on hour. Has something to do with my HAE diagnosis and possibly the treatments. May also be the HAE made my Ehlers as bad as it was because they both effect subcutaneous tissues and can be autoimmune based disorders and other stuff like that.
Oh I am so sorry the positive side effects did not last...hang in there!!!!! Your a very bright kid and tough too, your parents must be proud :) I'll be praying for you...you have had to deal with so much at an early age...take care!!! --Cindy :)
Well turns out i may not have/ever had Dysautonomia. The loss of sitting seems to be due to my vertebra issue as well as the neuro issues from Dysuatonomia being caused by HAE which can cause swelling of the brain and lead to neurological issues.
Oh and it turns out i problaly do NOT have swelling of the brain- just my ANS and CNS playing tricks on me from the Dysautonomia and the worsening of my HAE plus some of the different meds that have bad adverse effects.
I know that you have BAD times, as we do with dysautonomia. I hope you believe in God; your life is a blessing and a mission for the rest of us. Highest Personal Regards, Dr M
As of now i am a big Dysautonomic lol. So i guess i take back at least half of that statement i made. I do still think i have vertebra issues i know i do but ya i have Dysautonomia lol. What is caused by what because of what i do not know lol.
Thanks for your reply, It is important that we try to help provide me some scientific data so I can try to make some sense out of this disease. Other neurologists, etc., will one day be showing our videos in medical schools.
I will add your name to the list on the Dr. Kowalczk video...unknown...
How old are you? I know one person is 19 years old; you look too young to have been through so much. But I know what i tis like to be in the hospital for long times.
Who is Dr. Kowalczk? If in the future when im sorted out you need more videos i have many of them with my many autonomically off episodes(we have video montored EEG's, home videos done to bring to docs, i keep doing mine by flip cam now i am sure we have more somewhere else as well cause we spent so long trying to figure me out they told us to video them).
I am 17 as of October 30th.
Sadly Dysautonomia is nothing compared to the new diagnosis but we are working hard.
It would be an honor for me to have copies; I will see that they are dissected in the right hands. You are so sweet.
We think of you often and place you in the prayer bubbles that float up to God. I will PM you to send you the Dr John Kowalczk video; trying to organize people into different categories.
Most amazing: we have a following of people who never heard of dysautonomia, but are willing to try to understand it.
We are asking people to asktheir doc: "Do you know what dysautonomia is?"
Dont know if i believe in God, sorta feel its a waste of time to think through if i even believe but i am a very logical/scientific person and i do enjoy my religion lol( I'm Jewish) but i do like to be here to help others which is basically the same as "my life is a blessing" or "this happened for a reason".
Ah...I wish I knew all the Jewish customs so that I could understand Christ even more. In medical school at Oral Roberts University in Tulsa, OK, our class was full of Christians from many states and countries.
I spent time with one Christian med student who had converted to Christianity. He said the biggest thing that he missed was the companionship, the 'family' feeling that was not always there.
The New Testament, as you know, prophecy about the Christ was taught. I died and went to heaven
Hi Dear engodo2525, I assumed perhaps you did believe in God because your name has the letters g'o'd' in them...kinda unique, nice.
Nice to meet another scientist; and I can tell you that I have been to the door of heaven, when I died in my first ER visit.
Wrote a book on it.
If you are interested, can send you a book. Otherwise, you can follow the author's readings, as I have been reading it on my channel. I know that not every one can read a book.....me included...LOLove, Margaret
DysautonomiaMD 2 years ago
Lol Engodo was the name of a virtual pet i adoped online when i was little. Random letters selected by computer. It was a shelter animal.
Well i have not died unless my birth counts but i have come close enough to not want to.
Do you know why you cant read books? I have that issue i can read online but with books i usually get two pages and go limp then convulse due to the hyperadrenic POTS though as of now i can read again most days.
What kind of book is it?
engodo2525 2 years ago
What do you mean by the Ehlers goes away? Thanks for documenting your life. It helps me and will help others as well.
angelEDSer 2 years ago 3
Well after the first FFP my Ehlers sorta just totally cured itself, though it came back, currently it is here on and off depending on hour. Has something to do with my HAE diagnosis and possibly the treatments. May also be the HAE made my Ehlers as bad as it was because they both effect subcutaneous tissues and can be autoimmune based disorders and other stuff like that.
engodo2525 2 years ago
Oh I am so sorry the positive side effects did not last...hang in there!!!!! Your a very bright kid and tough too, your parents must be proud :) I'll be praying for you...you have had to deal with so much at an early age...take care!!! --Cindy :)
poetrygal1 2 years ago 2
thanks!
engodo2525 2 years ago
Well turns out i may not have/ever had Dysautonomia. The loss of sitting seems to be due to my vertebra issue as well as the neuro issues from Dysuatonomia being caused by HAE which can cause swelling of the brain and lead to neurological issues.
engodo2525 2 years ago
Oh and it turns out i problaly do NOT have swelling of the brain- just my ANS and CNS playing tricks on me from the Dysautonomia and the worsening of my HAE plus some of the different meds that have bad adverse effects.
engodo2525 2 years ago
So sorry you went through this;
I know that you have BAD times, as we do with dysautonomia. I hope you believe in God; your life is a blessing and a mission for the rest of us. Highest Personal Regards, Dr M
DysautonomiaMD 2 years ago
As of now i am a big Dysautonomic lol. So i guess i take back at least half of that statement i made. I do still think i have vertebra issues i know i do but ya i have Dysautonomia lol. What is caused by what because of what i do not know lol.
engodo2525 2 years ago
Thanks for your reply, It is important that we try to help provide me some scientific data so I can try to make some sense out of this disease. Other neurologists, etc., will one day be showing our videos in medical schools.
I will add your name to the list on the Dr. Kowalczk video...unknown...
How old are you? I know one person is 19 years old; you look too young to have been through so much. But I know what i tis like to be in the hospital for long times.
Wishing you nice flowers for 2010!
DysautonomiaMD 2 years ago
Who is Dr. Kowalczk? If in the future when im sorted out you need more videos i have many of them with my many autonomically off episodes(we have video montored EEG's, home videos done to bring to docs, i keep doing mine by flip cam now i am sure we have more somewhere else as well cause we spent so long trying to figure me out they told us to video them).
I am 17 as of October 30th.
Sadly Dysautonomia is nothing compared to the new diagnosis but we are working hard.
engodo2525 2 years ago
It would be an honor for me to have copies; I will see that they are dissected in the right hands. You are so sweet.
We think of you often and place you in the prayer bubbles that float up to God. I will PM you to send you the Dr John Kowalczk video; trying to organize people into different categories.
Most amazing: we have a following of people who never heard of dysautonomia, but are willing to try to understand it.
We are asking people to asktheir doc: "Do you know what dysautonomia is?"
DysautonomiaMD 2 years ago
Dont know if i believe in God, sorta feel its a waste of time to think through if i even believe but i am a very logical/scientific person and i do enjoy my religion lol( I'm Jewish) but i do like to be here to help others which is basically the same as "my life is a blessing" or "this happened for a reason".
Thanks for all the kind replies!
Hoping you are well!
engodo2525 2 years ago
Ah...I wish I knew all the Jewish customs so that I could understand Christ even more. In medical school at Oral Roberts University in Tulsa, OK, our class was full of Christians from many states and countries.
I spent time with one Christian med student who had converted to Christianity. He said the biggest thing that he missed was the companionship, the 'family' feeling that was not always there.
The New Testament, as you know, prophecy about the Christ was taught. I died and went to heaven
DysautonomiaMD 2 years ago