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Dysautonomia

I have been diagnosed with dysautonomia for almost 3 years. I can remember the day I started feeling different. All of the sudden I couldn't swallow. It felt like there was a lump in my throat. I felt like I couldn't eat or drink anything. Then I started having blurred vision and heart palpitations (I had been diagnosed with MVP several years earlier). My ENT doctor thought it was some sort of virus (i also had terrible neck, back, and joint aches) so he gave me steroid shots which put the disease into overdrive.

For the next 10 months I experienced such a range of symptoms that no doctors could figure out. My heart would race and flutter, I couldn't sleep, terrible digestive problems (was prescribed to Nexium for the heartburn), neck/back aches, blurred vision, numbness in the hands and feet, terrible fatigue, extreme anxiety, headaches, stomach aches, fainting, stopped menstruation, leg cramps, and awful ringing in my ears. I also had a very low blood pressure. I went to neurologists who gave me MRIs, CAT scans, and shock tests (very painful). I continued seeing Gastro doctors who gave me barium swallow x-rays to see if I had a tumor in my throat or stomach. I went to allergists, more ENTs, General practice doctors, and an Infectious disease doctor who was convinced i had Lyme disease and gave me a spinal tap. I had every test you could be given. Finally the allergist suggested I see a Dysautonomia specialist. The second I got my results I cried I was so happy to have a diagnosis.

Since then I have been living with all of the normal/awful symptoms of Dysautonomia; POTS, Orthostatic hypertension, Scoliosis, Anxiety and Sleep disorders, MVP, IBS, etc. Just like most people with this disease, there are good days and bad days. The bad days are just so hard. It's a lonely disease to have because no one really understands what you are going through and it is so hard to describe. I have had several break downs to my family thinking that I'm the only one who feels this way, and I'll never get better.

I know that God gives everyone different struggles for different reasons. I also am happy every "good" day that I have, and I hope that my story will help others who feel like they have no one that knows what they are going through to understand that others do.

 

EMeg EMeg 22-25 7 Responses Oct 16, 2008

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EMeg,
I feel your pain! I was diagnosed two years ago this month at the Mayo in Scotsdale, AZ. I have most of your symptoms and then some. Many sleepless nights. I've forgotten what it feels like to sleep all night. I was told to keep moving, so I do, though at times that is a challenge. I'm married to a Physician, and most times even she does not understand what I am going through. Yes, I've had what seems like every test known to mankind. I keep hoping that maybe one day I'll know the cause, but so far no luck. I hope you find the peace I've been looking for. Good luck! Keep moving!!!!! Joe

I have seen several members post here about swallowing difficulty- I have recently experienced near blackout episodes of choking- on nothing but saliva or water- I also have to take very small bites of food and chew it for a long time in order to be able to swallow or it feels "stuck" at the end of my esophagus and I can feel it's movement all the way down to my stomach, moving too slowly- and it hurts when it gets to the chest area- anyone else have choking issues?

Your story is almost identical to mine. I feel for you! Friends and family and bosses say they understand, but they can't- it's not possible. No one understands the massive effort- the struggle- the faith it takes to get up every day and try to be a productive member of society and be treated with respect- compassion- love... I will pray for you too- we gotta all stick together.

I would love to know what your doctor does that is helpful to you.

I totally understand!!!! I have had symptoms since i was a teen but everything worsened after having my oldest daughter which is now 13. I was diagnosed with so many different things and had so many different tests run on me but it wasn't until a Dr. told me that i wanted something to be wrong with me that i finally just gave up. There were times that I could not get out of bed, other times I couldn't walk in a straight line, I blacked out several times, had terrible migraines and numerous other problems. About a 2 years ago I had this worse episodes and ended up in the ER several times not sure if I was having a heart attack. My doctor told me that my heartbeat was irregular, my heart rate even at sleep was like I was jogging, my vision was awful, balance gone and all i could do was pray. God answered my prayers through an ER visit where a fill in ER doctor told me he thought I had POTS. It was the first time any medical person had mentioned this. I am now under the care of a WONDERFUL doctor that specializes in dysautonomic disorders. I have felt so much better but I still have THOSE days!!!! The only thing I have been struggling with recently is the problem of swallowing. It gets so bad sometimes when i try to eat that i feel like i might blackout if i don't get my food down. I have my regular appt. next month but if anyone has any thoughts please let me know!!!!!

who/where is your doctor????

EMeg-<br />
<br />
You're story is very similar to mine. I can definitely empathize with you. Let me know if you want to talk or if there is anything I can do.<br />
<br />
I'll be praying for you.<br />
<br />
-Tori

same here- so much alike- we have to send prayers out for each other- i believe in the power of good energy- send it out to others in need and it comes back. Hugs.

My Grandaughter has just told she has the same problem. Are you any better and what do you expect for the rest of your life? I trust you that relief will be found for and others. I will pray for you as I pray for my grandaughter.<br />
My grandaughter is in college and just about can not function. She would be a straight A student but anxiety has consummed her.<br />
If you have any advice, it would be nice to receive. <br />
Good luck.