Idiopathic Autonomic Neuropathy

I am the first person in the world to be diagnosed with Idiopathic Autonomic Neuropathy. Here is my story:

My symptoms started when I was twenty and my symptoms were normal, so nobody was expecting my illness to progress to something worse.  I had my two kids and the doctors said it was female’s problems, so I had a hysterectomy by the age of 25.  In the mean time, I was losing functions of my body, such as my bladder and colon.  That’s where some of the other diagnoses started coming in place.    The symptoms started growing rapidly and the doctors were clueless.  The doctors were in complete awe because no matter how many times they tested my organs, the tests always came back stating that, in fact, they weren’t working properly, and soon, my organs were going to be paralyzed.  In the meantime, the disease continued to spread to my small and large intestines and esophagus.   By this time, they removed my appendix and gallbladder.  I was sent to specialists all over California to be studied in hopes for answers and a cure.  My medical files were put in a database for doctors all over the world to study, since I was such a unique case.

My diagnosis is Idiopathic Autonomic Neuropathy.  And to date, I am the only person in the world known to have it.  The way it was explained to me was IDIOPATHIC= it is unidentified, and AUTONOMIC= everything that is supposed to work without me thinking about it.  Over the years, my organs started slowing down their functions until eventually they were paralyzed.

One thing all the doctors agreed on, was people with Autonomic Neuropathy typically are born with type A diabetes, and have lived with it their entire life, struggling to keep their blood sugar under control.  It certainly doesn’t happen to someone such as me, where I don’t have type A diabetes.

The doctors started suggesting going on a ‘scavenger hunt,’ removing my bladder, colon, and cutting out more than half of my intestines.  Finally, I saw a doctor at UCLA and he made a promise that he wouldn’t let anybody take any other organs from me, unless it was proven to be a life-and-death situation.

I had put too much trust in doctors, and they were taking body parts out, left and right just to see if, by chance, that was what the problem was.  Honestly, I felt like an old damaged beat up car taken to a scam-artist mechanic; they tell you, “Oh, it’s your alternator,” so you pay for a new alternator thinking your car is going to be fixed.  NOT!  Then, they say it’s a battery, so you do the same thing, but that’s not the problem, either.  They rip out all the computer components in the car and fuel injection, yet they keep promising you after they do this, that your car will be “healed,” but the truth is that it gets “sicker.”

I withdrew from everyone, and became distant because everyone thought it was all in my head.  It made me question my sanity, “Is this in my head?”  People called me a drug addict, because I took so much medication.

My doctor at UCLA wanted to try something new and promised me he wouldn’t cut anything out of my body. He said he would put a pacemaker in; I was going to be the very FIRST person to have this procedure done!  I knew it was a trial and error procedure.  The way I saw it was that I had nothing to lose and everything to gain if it worked; I would have a new beginning.  If it didn’t work, then the doctor would simply go in and detach the pacemaker and I would be exactly in the same situation as I was before the surgery.  Granted, I might not be as normal as the next person might, but who can really say what normal really is.

I was thrilled that I didn’t have to use a catheter up to five times a day or use an enema 2 to 3 times a day.  Things are still sluggish on my insides and I still have episodes where I get septic poisoning and have episodes of major pain, but, I’m managing and it’s something to work with.  I’m glad to be part of history, because I am the very first person to receive such a pacemaker for this purpose.  Within the eight years after my procedure, doctors have performed 50 others.

Right now, after eight years after my pacemaker was inserted, it stopped working, so doctors are getting ready to put in a new one.  I’m looking forward to getting my new pacemaker because I’m ready to be back, good as new.  It’s truly been a blessing for me.

Since my procedure, doctors have called me from all over the world asking me questions about my symptoms, treatments and their effects.  My doctor shared my contact number with other patients like me, so we can exchange our stories to see if we have similar symptoms.  The people I have talked to are at the end of their wits, just as I was. Other people like me have been scammed into medical ‘treatments,’ and are burned out, with no hope.  They could talk to me, the girl who threw her hands up and said, “I’m all yours doctor, and I promise I will not let another knife-happy doctor start cutting away parts body parts that I really need.”  I put my trust in my doctor at UCLA, and promised him that even though I’m an experimental case, I wouldn’t make any decisions without him.

Technology has come a long way.  It’s hard to believe that I’m actually the first person in the world to have this disease, much less be the first one to have a doctor experiment by putting a pacemaker in my intestines to shock my organs, so I can live the best life I possibly can.

It took YEARS and YEARS to come up with my medical label, so I want to share with people because if it helps one person, I feel like I’ve accomplished something.  I don’t mind sharing my experience because I’m hoping my story may touch someone and help inspire doctors to do more research to help others.

14 thoughts on “Idiopathic Autonomic Neuropathy”

  1. Thanks Renae @luvsfireflies, for the article. It is a fascinating story. You are so brave for allowing all the ‘experimentation’ necessary to help find you some relief. I enjoyed speaking with you regarding this, as I had never heard of the disease before–since you are the only person in the world who has it! How did you deal with the attention by other doctors/ medical profession; I would think it must have been kind of nice to tell them about your experience, since it is so unique?

  2. It’s a fantastic story. Your honest assessment of the situation is appreciated. Everyone with a disability faces challenges in one form or another and must adapt to be able to function in society in whatever ways possible. I tip my cap to you. I was moved by your story.

    Respectfully,

    Aaron Ruey

  3. Still now, I am amazed when I read this. It puts in perspective to be thankful for each day we have on this beautiful planet – and to be grateful that our situation isn’t more severe than it already is. Let’s face it – can we ask ourselves the question – and it’s almost a cliche – “Could it be worse?” Most of us probably would answer, that yes, in fact, it could be worse.

    I love the attitude, the honesty, and the education I receive when I read this – and I am totally sure this won’t be the last time I read it, either…

    Aaron

  4. Thank you so much Aaron….. I just barely came across your replies. I can’t figure out why I’m not getting some post until days later and other post right away. Ron’s been trying to help me because it’s not the site it has to be something to do with me or my computer.
    It’s something to live with Idiopathic Autonomic Neurapathy but to actually sit down and pour out your heart and have it stare you in the face. Wow I didn’t think it would really open up alot of area’s in my life. And I have to thank Sarah as well. She’s such an SWEETHEART she helped me so I can’t take all the credit.
    Haven’t seen you on the board lately hope everything is going well for you….
    Have a great Week!!!!

  5. Dear Renae, I’ve been reading your article just now – I’ve been out almost all day, then visited my mum….
    and my two cats. Well I must explain: both cats used to live with me, but since my illness they have been hosted at my mother’s house (Apt.) given the fact i had to stay away a long long time, 10 months in all.
    Your article is incredible your illness is incredible u are incredible. U speak of it with such nonchalance, easly, almost detached, though it must have been hell, all the way.
    So happy your here with us Renae! Tessa

  6. Tessa, I’m glad you enjoy my article. Thanks for all the compliments. I can’t take 100% on it because Sarah proof read and helped where needed. But the illness is all mine. It was a challenge that’s for sure. Hope your having a day full of spoons. Renae

  7. What an amazing and inspiring story. I’m sorry you had to experience all that with the doctors. Doctors do not always adide by their motto, “First Do No Harm”. My own experiences and that of my family is they have done more harm than good. But I’m glad you are finally in the care of a good one.
    I pray you new procedure turns out successful.

  8. Thank you. I’m glad that I’ve been able to make a mark in history, hopefully I’ve been able to help at least one person by sharing my story.

  9. Well, even now, as I read this – I am inspired by how delightful your personality is – even among all the complications. Truly inspiring and amazing! =)

  10. Renae-
    Thank you so much for your article. I am so impressed with your insight, ability to overcome and move in. You are truly an inspiration to me. I do have a few questions for you however. I suffer from a relatively new diagnosis of idiopathic gastric neuropathy. This is autonomic and for years I have suffered a myriad of symptoms that no one could explain. I began about 15 years ago getting constipated for 2+weeks. I was eating fruits and grains and vegetables, just nothing moved along. I drank water and exercised. I began having pain and they took out my gall bladder. I then began to have issues with fainting due to low blood pressure. I also can not handle extremes in temperatures, I become debilitatingly cold and pass out hot if the temperature fluctuates 15 degrees off 75 plus or minus. I have situational drops in blood pressure that my body has a hard time compensating for and will pass out easily if I stand up after sitting, lay on my stomach etc.

    The last 7 years I have experienced my least favorite symptom- I will go a few days (3-5) without a bowel movement, then suddenly I will get severe abdominal pain, and within minutes, I will HAVE to use the restroom. I will break out in a cold sweat, shivering and will begin salivating profusely. As I am having a bowel movement, my body also suffers extreme and violent vomiting. This can happen one time in a day or a series of “episodes”. I now have a bowl by the toilet, as well as carry dog “poo” bags with me in my pocket at all times in case this happens in a public place. I will use the bag to throw up in while having the BM. Once I experience the cramping, I know I HAVE to get to a restroom within one to two minutes. Not only is it horrible uncomfortable and difficult to walk, I will begin to salivate and vomit as well as break out in hives on occasion.

    Last year I suffered an appendicitis and had my appendix removed, after the surgery I was told by my surgeon that I had a very enlarged and “floppy” colon. Whatever that means???? Anyway, have you ever suffered any of these symptoms? Did you find anything that provided a level of relief?

    I own my own professional pet care company and thus board many dogs, daycare, and walk up to 9 miles a day at the very least 5 days a week. I am active, not overweight and desperate to find some sort of relief. I had a hysterectomy in 2004, due to severe endometriosis.

    Any help would be great

Leave a Reply