And, the Lucky Disease is … Dysautonomia!!!

That’s right, I even took a picture of what my doctor wrote down for me.  I have Acquired Idiopathic Dysautonomia with Polyneuropathy, and I couldn’t be happier. How cool is it that my doctor even misspelled a word?

When I heard him, I was like, “What the fuck is that?”  Acquired Idiopathic means they don’t know exactly how I got it, but it could have been due to:

• Autoimmune disease, such as Guillian Barre (I may have this, but both my doctor and I don’t want to do a spinal tap.  I told him not unless I’m dying!)
• Epstein Barr Virus (Which I have.)
• Heavy Metal Poisoning (Which I may have been exposed to growing up in ‘the Heights.)

And Polyneuropathy means multiple nerve damage, which I have per one nasty EMG.  Good times!

So, this just leaves Dysautonomia, pronounce “Dis-Auto-No-Mia.”  It’s complicated and can kill me, but I am just so happy to know that I am not crazy.  Because I KNEW something was very wrong with me.  It took many doctors, thousands of dollars worth of tests, and the determination of one nutty bitch to get it done.

So, here is what this crazy ass disease is all about.  Before I begin, let me say this:  There is barely anything out there on the web on it, one version of it is listed on the rare disease database, and I have found very few bloggers who talk about it, let alone the fact that there was only one book in my public library that even talks about it and even then it is a two in one book. So I’m going to write a long post, for those who are out there and wonder what the hell is going on?

Dysautonomia is a disorder of the autonomic nervous system (ANS) function.  ANS controls the unconscious bodily functions, such as:

• Breathing
• Heart rate
• Gastrointestinal
• Muscles
• Blood Pressure
• Urinary
• Bowels
• Muscles
• Metabolic
• Endocrine

In easier terms, I have a delayed, inappropriate, and/or exaggerated response of my nervous system to stimuli that are either internal or external.  Researchers have found people with my disease have excessive amounts of Adrenaline, and we are also very sensitive to it.

My symptoms, and the symptoms of this disease are:

• Excessive fatigue.  I feel so tired that I literally lay in bed as much as possible.  Nights and weekends I’m done for the count.  Even at work I have been known to lay on the couch during my lunch hour.  I also have Fibromyalgia.
• Light-headedness/Dizziness/Vertigo.    I have been nauseated daily since 2005.  It’s not constant, but it comes and goes every day.  And I have been diagnosed with Vertigo.  I feel dizzy often, and when it happens out in public or while driving I get really scared.
• Syncope.  I had fainting spells in high school.  And a few times in college, now that I have been thinking about it.  I passed out quite a few times, but I just thought it was from being semi starved.  Not by choice, but from crazy mom and being poor and on welfare.  Recently, I passed out this summer, and have been increasingly feeling more faint this winter.
• Anxiety/Panic. Strangely enough, I have read that going into a hot tub/sauna gives you a delayed anxiety attack.  I had a few in the mid-90s, and this was when I went to a hot tub/sauna nightly.  This was the reason I ran away to Vegas, and then ran back.  (A story for another time.)  I barely get them, but from time to time I will wake up in a panic, thinking something horrible.  I control them with behavior techniques rather than meds.  Works for me.
• Rapid or slow heart rate.  I have Bradycardia, (Heart rate slow, under 60) and an extra beat in my heart.
• Headaches.  I have migraines, and cluster headaches and tension headaches.  My migraines have gotten better with Relpax and the fact that I removed my endometrium, thus cutting back on periods. I get these really weird headaches in the back of my head.  I actually prefer a migraine to a headache.  At least I have medicine that works for the migraines.
• Pallor.  From time to time the nice older ladies at my work tell me I look pale.
• Malaise.  Shit, everything hurts and I always feel like bloody hell.
• Fatigue.  My number one symptom.  If I could feel refreshed for one day in my life (Not since 2003.) I would sell my soul, maybe.
• Mental Confusion.  This is the worst.  I do everything from buying the same gifts twice to calling a door a window to just plain misspelling words.  I’ve revised this post four times in ten minutes.  Keep finding mistakes.  I had to quit graduate school because I can’t read my notes.
• Facial Flushing.  I have this often.  Plus, I have Roceasea too, which is an autoimmune disease of the skin.
• Constipation or Diarrhea or Irritable Bowl Syndrome (IBS).  Lets not go there.
• GERD/Acid Reflux.  Yep, got that too.  Yucky.
• Visual Disturbances.  Haven’t been to the eye doctor in three years.  I have seen black floaters since 2005.  And my eyes unfocus from time to time.  Once I saw something that can only be described as an acid trip.  Freaked me out.
• Urinary problems.  I have to pee like every 40 minutes.  Not fun.  Once in Europe I had to hold it for four hours and was crying like a baby.  The fear of peeing your pants is horrifying.  I was referred to a top specialist in Michigan and he couldn’t find anything wrong inside my bladder.  Thank god I never have to have a Cystoscopy again.  OMG those are HORRIBLE.
• Orthostatic Hypotension.  My blood pressure fluctuates from 100/30 to 60/42 to 70/50.  When I got diagnosed my doctor took it and I told him it would be high, because I was stressed from having my car break down on the way to my appointment.  It was 100/70.  Normal is 120/80.
• Numbness.  My hand and feet go numb all the time, for years now.  It freaks me out and hurts.
• Nerve Pain.  Yep, I get burning and stabbing pains all over.
• Trouble Breathing.  I have Asthma, and get chronic Bronchitis and have had Pneumonia twice.  (Once was in Paris, on my honeymoon.  I was trapped in a hotel room without books and the Paris Hilton jail release scandal for four days.  My Pulmonologist has been doing tests and has found my right lung is functioning at 75%.
• Chest pains.  I have horrible pain, which has sent me to the emergency room.  Daily since 1999.  Mostly mild, but tonight its at a 7.  I have to ignore it and its very hard.  Sometimes it is in my right breast or radiates all the way to my back.
• Severe Cough.  When I asked my son “What do you see me do all the time he responded “Well, you cough a lot.“  We were cracking up.  I cough and cough and get no relief.  I have to constantly tell my co-workers who forget “No, I’m not coming down with anything.”
• Sleep disorders.  I have been diagnosed with Insomnia and Sleep Hypopnea (Where your breathing slows down.)  I hate sleeping pills, because they make me more tired, and my mouth tastes like metal.
• Endocrine disorders.  I have Hashimoto’s Thyroiditis, my second autoimmune disease.  Finally taking Synthroid after four years from when I was first diagnosed.  I feel a little better, and have caught myself smiling at work for no reason.  So I know its working.  Thank god!
• Lady issues.  Not a technical term, but I have everything from a double uterus to heavy periods, ovarian cysts and endometrial polps.  and, even though it wasn’t supposed to, my endometrium that was ablated (Burned out) has grown back within a year and two months.  I do not want to get a hysterectomy, but I can’t have all this and periods again.
• Thermal irregularities.  I’m always heat intolerant, and get really cold hands and feet.  The book I was reading says that your temperature should be 98.6.  Mine was low, 97.4.

When I told my medical doctor about my diagnosis, he drew a blank, gladly accepted the literature I had found on the web, and told me he hadn’t heard of the disease I have in over 40 years, since medical school.  He was AMAZED that my neurologist caught it, and said how it really fit everything I was suffering from!

So, there is no cure, and not much can be done to treat the symptoms.  I have been prescribed thigh high compression tights,

which take ten minutes to put on with special gloves and make me pee, and Midodrine,

which will raise my blood pressure.  It can put me into cardiac arrest, but my cardiologist says I can try it.  I’m scared to.

The outlook?  I may have other diseases that go hand in hand, like Sjogren’s Syndrome, (Which my neurologist thinks I have, and my Rheumatologist said he wasn’t sure.) Parkinson’s disease, Guillian Barre, or Mitral Valve Prolapse Syndrome.  Actually, I have many of the weird symptoms of the MVPS, like being tall and lanky, long fingers, Scoliosis, and micromastia, which, swear to god, is “smaller than usual breasts, unlike the rest of your family members.”  My mom is bigger than a DD.  I think she is EEE.  In high school, I was voted third smallest boobs.  Before getting fat, I was flatter that Gwen Steffani before her hush-hush boob job.  Oh, and two of my heart valves have mitral regurgitation, include the mitral valve, which my father and his father both had replaced in their early fifties.  Who knows?

According to the National Institute of Heath, people with chronic Dysautonomia generally have poor long-term prognosis.  Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest.

By the way, Happy Rare Disease Day!

I have found these two websites to be helpful:

http://www.dinet.org

http://www.ndrf.org/

Thank you if you read this all the way through.  If anyone has more info, please comment or email me … or if you suffer from it yourself.

Ghetto Girl