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- - Hi Everyone~ (https://www.neurotalk.org/new-member-introductions/44911-hi.html)

Hi Everyone~

This is my first post here. I'm so glad to have stumbled upon this site! I'm 39 years old and I have a multitude of issues going on right now. Things are quite difficult to handle to say the least. My story is so crazy that many doctors have a hard time believing me! My friends call me 'Murphy'! :D

I was diagnosed with RSD in 1999 after a major car accident in which I fractured my left upper arm and injured my left brachial plexus (this is a major nerve branch that runs from the neck (C-Spine) through the shoulder and down the entire arm). I was blessed to find an awesome pain management doctor for this back in '99. I had several stellate ganglion blocks and also radio frequency lesioning. I was then put on Topamax and that has really helped with my pain from that injury.

In 2002, I got Salmonella poisoning with subsequent Reiter's Syndrome (or reactive arthritis) afterwards. I am still dealing with the terrible symptoms of that terrible illness to this day.

But what ultimately lead me to this website is that I was just recently diagnosed with Dysautonomia with Reflex Syncope. Last year after some significant oral surgery, I developed Pericarditis. After the acute phase of this illness I continued to have shortness of breath, chest pain, rapid pulse and low blood pressure when standing and even passing out if I would stand too long. At that time my PCP sent me to a cardiologist who in turn scheduled me for a ton of tests. I was eventually sent to Vanderbilt University Medical Center in Nashville -- one of the leading research facilities in the country for this disease. I am currently under their care for this illness. They are awesome!

Since August of last year I have passed out approximately 30 times. When I stand, sometimes only for a few seconds, I get very dizzy, my pulse rate goes up very high, my blood pressure drops very low and I lose consciousness. I have been in the hospital multiple times for this.

I have a lot of other symptoms that go along with this illness and I am interested in talking to others who might suffer from this or a similar disease. The last time I was in the hospital, a neurologist was asked to consult on my case and he mentioned that he thought I might possibly have Shy-Drager Syndrome. I did not know much about it, I was on a lot of meds at the hospital, and he didn't go into a lot of details. But when I got home and started researching it, I was really taken aback! The prognosis for this is really bad. So now I am left really wondering about my future.

I look forward to talking to others. Sorry to get so long.

Hello Addyson, what a pretty name you have. Welcome NeuroTalk from me, I'm so glad you found us.

I have to admit that I'd never heard of Dysautonomia until now, so I looked it up on the medical sites so I'd have a bit of understanding as to what you've been going through, and from what you have written, and what I read on line, it sounds like you must have been going through plenty.

I'm not sure which direction to point you in for that one, but maybe the Rare Diseases Forum: http://neurotalk.psychcentral.com/forum87.html

Headache Forum might also be helpful, and here's the link to that one: http://neurotalk.psychcentral.com/forum32.html

Another one for you is our RSD Forum as that seems like another place you'd probably be interested in at the moment, so here's the link to that: http://neurotalk.psychcentral.com/forum21.html

Welcome again!

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Well thanks so much Koala! I really appreciate the kind welcome! :)

I also appreciate that you took the time to look up Dysautonomia. I am not surprised that you had never heard of it. It is quite rare and, unfortunately, many doctors and nurses I have had to deal with in the last few months haven't known very much about it either. :confused: I won't even go into the horrible experiences my DH and I have had to deal with in the ERs in our area! I've worked in the medical field for almost 20 years and it has truly saddened me to see medical 'professionals' treat a patient with such disrespect and lack of compassion....and all because they were too proud to admit they were not knowledgeable about a particular illness. I never thought I would be fearful of having to go to the ER, but I'm sad to say that day has come. :(

Anyway, I just want you to know it really means a lot to me that you took the time to find out something about my illness. I will definitely take a look at the links you provided and I will be lurking about on the different threads.

BTW, I noticed on some other threads that there are some people with POTS (Postural Orthostatic Tachycardia Syndrome) and Neurally Mediated Syncope. Those are various forms of Dysautonomia. Hopefully, we can all get together and talk!

I pray the Lord will bless you and everyone here who is taking the time to support and help others who are struggling. :grouphug:

Blessings,

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Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

I see Koala has given you some link. Again welcome, looking forward to seeing you around.

Darlene :hug:

Hi Addy and welcome to NeuroTalk! :welcome_sign:

Sounds like you have had quite a time of it - hopefully you can find some answers soon. I'm glad you found this site - it's full of fantastic people. I'm glad you already found a few posts that relate to your condition.

Please let us know if you have any questions. :)

I wanted to welcome you to the forum.

I have RSD so you will see me on the RSD forum. I hope you will take time to check it out also.

It sounds like you have your hands full with what you are going through. I have 20 years of history with too many diagnoses so I do know how overwhelmed you must feel. Like you, I found a great Dr. over 17 years ago that has walked with me through my fight.

You might also check out the depression group. A lot of times we deal with depression along with all of these issues.

I hope you enjoy the groups and stick around. It helps to have the support as well as the knowledge you get here.

Ada

can cause neuropathies. There is a poster on our PN board here with
some similar problems with blood pressure.

Flagyl and Cipro/Levaquin are two very difficult drugs. Vancomycin also
can cause neuropathies. All three of these damage nerves.

You are welcome to visit our PN board--and post there too.

http://neurotalk.psychcentral.com/forum20.html

Hi, Addy! :Wave-Hello: Welcome to NeuroTalk!

Welcome Addy! :)

You sure have a lot to deal with, I hope the doctor is wrong about Shy-Drager Syndrome. If you read about it at Mayo, you'll see that it can be similar to other illnesses and is also hard to diagnose. http://www.mayoclinic.com/health/shy...ndrome/DS00989 I'm hoping that your problems are from something else and they can get to the bottom of it all.

Enjoy NeuroTalk, it's a great place!

Hello Addy *or Murphy* since your'e among friends here. Welcome to NeuroTalk. I see the others' have given you some good links to check out, so I'm just going to say I'm glad you found us and I hope you join in wherever you feel like it.

NT has many, many caring members. You'll feel right at home here.

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Hi there.

I read your post with fascination because last week on HOUSE MD, they had a repeat of just such a medical case.

This young woman, well every time she stood up, she fainted. She was brought in with other symtoms and they ran every test in the book on her but everytime they thought they had the correct diagnosis, BAM, they found something else.

They had given her an MRI and found nothing. She stood up, and she fainted. No one could figure out why because MRI's were given to her when she was lying down. Everybody was puzzled.

So the doctor ran over and made her stand up, and boom, she fainted again, everybody went crazy and they made her lay down. Then the picked her up, and boom, she passed out again.

Then the doctor told everybody, "Stand her up", and he said "get a load of this". He put his hand on her kidney and pressed it a certain way and she revived.

It seemed that she had something called a FLOATING KIDNEY, and no one could find this because everytime she lay down, there was nothing to be seen.

So, and I'm no doctor, but if they can't find a reason why you are passing out while you are standing, why not look into what I've just written.

You have nothing to lose.

Just wanted to share.

Melody

Hi Addy! Welcome to NT!

What you describe about passing out when you stand sounds like what my neighbor lady does. She missed her own dear son's funeral b/c she passed out in the bathroom and it was 2 hours before they could revive her.

Not sure exactly what she is dxd with, but it has to do with her blood pressure dropping, like you described.

I wonder if Melody is on to something that could help you?

Hi Twinks:

In the episode of HOUSE, when she was standing and she fainted, and he put his hand on the right side of her body and he said "watch this", and he lifted it, (no one knew what he was doing), and he explained that when we are born, we are born with kidneys that are attached to our bodies in a certain way.

Well (in the episode), this young woman had had this kidney hanging by a blood vessel (it was hanging, it wasn't SET in her body like everybody else's kidney), and what caused her to faint, was that she was just married and they were carrying her up in a chair around the room, and she was bouncing around, and the kidney was dislodged or something, and she immediately fainted.

They brought her in to the hospital (lying down on a gurney of course), and everybody was trying to figure out why she fainted.

She didn't faint sitting in a chair, she didn't faint lying down.

Only when she stood. Then the doctor explained that when she stood, the floating kidney, cut off a blood supply (doctor speak, I don't understand that part of what he said), but it had SOMETHING TO DO WITH A DROP IN HER BLOOD PRESSURE, so she fainted. As soon as she sat down or laid down, her kidney went back into place, and she revived, the pulse went back and her pressure was back to normal. Most amazing diagnosis I have ever heard.

He then said 'prep her for surgery", and said 'the doctor will put your kidney back where it's supposed to be, and you'll be fine".

So she should DEFINITELY at least ask her doctor to look into this.

You never know.!!!