I Got Out of Bed with Dysautonomia - July 11, 2009, 02:12 PM

[lawgrad06]

Thank you so much for your videos and your efforts to bring about awareness in the medical community. My first cardiologist blamed all my symptoms on frequent ventricular bigeminy, couplets, and mitral valve prolapse with mild-moderate regurgitation. He said that those things cannot account for all my symptoms, including near-syncope and syncope, so he finally referred me on to a world renowned expert in ANS dysfunction in the same practice. I would love to talk more with you at some point.

[DysautonomiaMD]

@lawgrad06 : Thank God you have access to an ANS expert...you are truly blessed. I'm here and there when I can, and I try to answer all my mail every day...so please do keep in touch, ok? LoLv.

[TJae1]

poor marge ~ U've come such a long way ~ 1 thes 5:23

[DysautonomiaMD]

@TJae1 Thanks. I am overtired after my father's funeral, and am drained of energy. Hoping to see some people I love tomorrow, and that is sure to make me feel better :-). Thanks for your friendship and your patience. LoLv.

[TJae1]

@DysautonomiaMD ~ left a text for the pin ~ pls confirm ~ mayb we can do a christmas gift swap this yr ~ yes ?

[DysautonomiaMD]

@TJae1 : yes, we can do a swap. Resting and napping today. Mucho cansado. very tired. LoLv and Happy Thanksgiving to you and your family.

[DysautonomiaMD]

@DysautonomiaMD: yes, thank God! It is amazing to see how much better I am...especially on a 'good' day! LoLv.

[maribelcaban]

Hello Doctor, It's maribel. Had chest pain all day but keeping the faith. I laid down but have to lay down again. 10 minutes on the computer and boom, pain and dizziness. Can't check my blood pressure don't have a cuff.

God bless you and hope your day is good today.

Maribel:)

[DysautonomiaMD]

@maribelcaban : I'm sorry about your chest pain & I wish so much, that I could be of help. Please send me a PM, ok? I look forward to getting to know you better :-). LoLv & if you can, just limit yourself to 5 min for starters, on the computer. Don't want you to be dizzy. Thank you for all your notes. You are a sweetie. LoLv.

[maribelcaban]

I have the same disorder. I was a paralegal and now also an activist for our cause. My family ignores me. I want to be normal too! Bless you.

[DysautonomiaMD]

@maribelcaban : I have to go out of state to find huge family that loves me....I am blessed with a couple of nearby relatives, but I almost wish I could move...just to be surrounded by love & have our daughter grow up with cousins. LoLv. You are my sister now, so POOF! you can count on me to be your friend & love you as much as I can, ok? LoLv.

[maribelcaban]

OMG! I have the same. Tired of the medical community too. Bless you!

[DysautonomiaMD]

@maribelcaban : hope you find a good doctor. PM me & tell me where you live, Ok? LoLv & never give up, ok?

[Gitarrencheck09]

wow - i ´m soooo thankful for this video - thanks for sharing

you both are sooooo sweeet - best greetings and blessings

bro. Ernesto.....

♥ Jesus be with you forever ♥

[DysautonomiaMD]

@Gitarrencheck09 : I love u and I miss u! LoLv to you, too!

[sherryh2009]

I am so happy that the world is beginning to "believe" and understand...

[DysautonomiaMD]

@sherryh2009 : and this vid was done In July, 2009. On July 11, we should re-evaluate and see where we've come in one year. Our prayers are with you all.

Highest Personal Regards,

Dr. Margaret

[phun4sheri]

My daughter (13 years old) was diagnosed with dysautonomia a few months ago. First symptom ( age 7) was a Gran Mal Seizure with no fever, but a major headache ( also her first). She was in TX Children's Hospital for 24 hours and they couldn't find a diagnosis. Symptoms like fatigue and migraines kept getting slowly worse. Now we think we know what she has, so hopefully she will learn to live the best she can with her symptoms. I'm trying to find out all I can and how I can help. Sheri

[DysautonomiaMD]

You have come to one of the right places, I hope and I pray. Thanks so much for telling us about your daughter. You will want to follow us also, on:

VirtualMedSchool1

new channel: 1st Dysautonomia Awareness 'Event' will be hosted by a YTube couple with a heart. Please keep your eyes out for all that is happening.....be of good cheer...........you are on our Lifeboat now, and we are all here for you. Please stay with us and give us a chance to shine. Survivors, we are.

LoLv,

Margaret

[DysautonomiaMD]

Thanks. Children are a Blessing from God.

The least I could do is share her with you a little.

Voice lessons started; the instructor said this little girl has a fantastic voice that belongs on Broadway! :-). Whoa on that, but good for us all. I will keep you listening to her songs :-). Thanks and LOL, Margaret

[radlikemad]

Your daughter is so adorable! and good for you for getting out to Starbucks on this day! Little things like that feel like such big accomplishments don't they? And for good reason! We should be proud of every little thing we are able to do! Every one of them is us fighting back against our illness!

[DysautonomiaMD]

If you "YouTube" Search now, "d" "y" "s" now leads to:

"Dysautonomia", "Dysautonomiamd" and "Dysautonomia POTS"...if you keep typing, you also get familial dysautonomia. The computer must be keeping track! Our numbers are growing and/or something NEW has happened! Am I the only one who noticed? I just noticed it today. LOL to all, Dr M

[jd450lh]

Dr M,

Thank you so much for bringing this to the attention of the medical world. If we all stick together, maybe someday the medical community will recognize Dysautonomia as a medical condition and not just a psychological problem.

Have a blessed weekend,

Jeff

[DysautonomiaMD]

I would like to have the National Medical Board Exams include dysautonomia in the differential diagnosis of syncope....this in itself would be groundbreaking. Another thing on my list...I'd love to contact them. But I'm getting so tired for today...remind me later. Sincerely, Dr M

[jd450lh]

Hi Dr. M,

As per your request, I am reminding you to contact the National Medical Board Exams regarding dysautonomia as a different diagnosis of syncope.

You are correct, this suggestion would bring a whole new awareness to the medical profession regarding dysautonomia. My prayers and thoughts are with you.

God Bless,

Jeff

[DysautonomiaMD]

You are awesome......and so are all my YT Friends! Mailer went out a few days ago, Oct 20, 2009. Let's keep this ball rolling.....! Highest Personal Regards, Dr M

[Trythisonline]

Thank you so much for spreading awareness.. I have POTS.. I am 51... what is the cure????

[DysautonomiaMD]

No one really knows exactly and scientifically for now, and a cure must be in the future. Great strides made just in the last week; good news that research is able to answer some questions that spur interest in Dysautonomia.

Disclaimer: Not meant to be medical advice for any one person(s). Seems we do better with compression leg stockings, electrolyte fluids, and most of all: listening to our bodies. We are trapped inside them but we have to wiggle around it. Highest Personal Regards, Dr M

[DysautonomiaMD]

God is in me and I am in God.

Children are a blessing from the Lord.

I hope you can all watch our daughter grow up.

Please pray for her first, not me. :0) Thanks, Dr. M

[Mazemortgage]

I find it hard to get thru the day also and feel your pain and discomfort. My prayers are with you. DysautonomiaMD, is there a site/url you can direct me to for research purposes? Thank you for sharing and God Bless

[DysautonomiaMD]

I am beginning to know and speak with a person involved with a dysautonomia research organization, and have been asked to provide some patient input into Good Samaritan's Campaign for Cardiology. I will do my best. Thank you ~ please keep praying for our family. Highest Personal Regards, Dr M

[DysautonomiaMD]

God has blessed me with a supportive husband, a smart son, and a 'ham' of a girl! Soon, these videos will become more and more professional as it moves from the 'general' info stuff to a nonprofit organization presenting a real issue. I have some homework for those of you that can do it: if you can log on to the internet, keep visiting here. Just so we can concentrate our efforts. Tell your families, too. I'm waiting for a 'following' to take with me to the Medical Board Exams. I need you all!!!

[DysautonomiaMD]

Thank you for all your comments and especially the fact that every single one has been positive and encouraging. My son Carlos will help me get this up an running more professionally, but I'm glad you guys get to know me now. Thanks for being a fighter and a Survivor with me!

[sarahdionna]

thanks for everything you are doing to help spread awareness and for staying strong while helping others! i will be praying for you. God will never let you go through anything you can't handle so that means He knows you are a "tough cookie" and with Him you can handle dysautonomia! :)

[DysautonomiaMD]

You are right. I have such a hard head that God couldn't just give me a broken leg or something. Seriously, though, perhaps I got dysautonomia just so that I could help the Cause. Whatever I can do, I will do. You keep your Chin Up, too!

[DysautonomiaMD]

Gotta keep taking one day at a time. Just one minute, one hour, one day.

[DysautonomiaMD]

Thank you all so much. If I miss a few days, Im probably too fatigued. If I end up in the hospital again (26 times so far), I need to ask you to pray with me. We can start a prayer chain for any one of us who is in dire need, or just to talk. Please keep up your own faith. In God, in yourself. You can do this. You are holding on to a thin string, but we can pray for one another so that our Voices become heard. Really heard. Thanks and Fondest Hellos, Dr. M

[DysautonomiaMD]

I was back on an iv for the last 24 hrs, and it accidentally pulled out. So Im sitting and contemplating how we can best proceed. Please post a comment to keep learning together. Each day is its own day with its own troubles. Concentrate on today. Today. lol, Dr. M

[luminescentfeeling]

Great video again MD, well done for getting outside it must have been daunting being so ill. I like your videos they have a positive message, yet are realistic and gritty. I am glad you have a child of your own to love and be loved back it must help you keep going throughout all this hell.

[DysautonomiaMD]

This is a kind of hell, but the good news is that it is temporary, as our lives are. We seem to become 'victims' of the health care industry, and now I just think that you are right...we can gain our own kind of confidence that experience is right, not the medical school books. Thanks for helping to change things...You are exceeding my expectations :-). Keep it up! LOL, Margaret

[SANDMANCASTHISSPELL]

I am sooo glad you got out! Its a wonderful feeling to be free even if its for a few hours! Im glad your here.

[DysautonomiaMD]

We never know how a day will be, will we? We can plan appointments that we cancel because we can't get out of bed. I'm glad you are following along, and I wish you the best. I'm here to help you, and with God's help, I hope we can make a real 'dent' in dysautonomia.

[kaazoom]

Thank you for making this video. It is so important that people tell their stories. God Bless.

Paul

[DysautonomiaMD]

Thank you. God has been my strength and my fortress.

[DysautonomiaMD]

Thank you each for spending time watching my video. Can we do one thing together, just for starters? We need to be a straight pointed arrow together. First thing? Get everyone you can to view my videos/youtube spot. Let us see how many of us there are out there.

[lednugenna]

Thank you. You are amazing. What can we do?

[DysautonomiaMD]

Please keep following my videos. I hope to direct all of us to an area of more knowledgeable ground. With every entry that each of you makes on my site, we grow closer to tightening our Circle, to serving our Cause. Just stay with me for now. Tell your family and friends, and stay with me. I need you. Thanks and Highest Personal Regards, Dr. M