sorry we don’t know what it is

i have major issues with western medicine.  it started 18 years ago when i had my oldest son, and has morphed into different styles and colors but it is always disgust and disdain that i hold for the healthcare system.  sometimes it is hard to separate hatred for the system from hatred for the healthcare professional.  many times these emotions overlap and feed into each other.  drs are taught to look at us in parts, systems, as though we are not holistic beings we are pieces that work independent of each other-which is false.  we are electrical impulses and chemicals and cells and organs and systems and a person.

for the last 10 years i have been struggling with illness.  during the first 6 months, i was probed, prodded, analyzed, xrayed, and diagnosed with everything from ovarian cancer (which was not true) to being mentally insane (also not true), but after a year the drs snuggled down into the diagnosis of fibromylgia and osteoarthritis in my back.  they loved this diagnosis.  it was cozy, but it was wrong.

this last june, out of the blue, i lapsed into complete exhaustion.  i could not keep my eyes open.  i did what you are supposed to do, i went to the dr.  he just shrugged and said “i dunno what to tell you…” we asked, and yes we must ask, to have blood work done.  he tested my thyroid in the office and it turned out to be low, so he sent me to the lab to have a more comprehensive look at my actual levels-all came back normal.  “i dunno what to tell you…..” again we asked for him to run more labs.  by this point there were some obvious neurological things happening in my body-involuntary muscle spasms, a burning feeling under my skin, feeling like i did when i was 14 and would drink 3 bottles of mad dog 20/20, after i threw up but before i would pass out-that spinning, chawhawhawha, feeling, one sided tingling, falling down, lethargia, nausea,  inability to speak i full sentences.  all of these things and more but none constantly.  he ran the blood work, and i am waiting to hear from my neurologist.

the last time we went to the dr it was about 2 weeks ago.  he had my lab results back.  my partner and i sat in the room.  i was prepared to hear “i dunno what to tell you….”, that is what they all say, everytime.  she was nervous.  sometimes i think she might doubt my sanity too, but she is just too polite to say so.  the dr in his stiff lab coat came into the room.  he pulled my chart up on his handydandy computer and started reading off my results “your cbc looks good, chemistries are right, sed rate is ok, there is nothing wrong with you liver, kidneys are functioning correctly…..” i just hung my head-fuck here we are again!  great!  my partner was starting to tear up.  “o but you have mono.”

i explained to the dr that i had been diagnosed with mono about 13 years ago.  it was so bad that they had me in the hospital and i continued to show up negative for it, so they thought i had lymphoma.  i went through a round of chemo before the test came back positive.  it was a pretty severe case.

mono is caused by a virus called epstien barre,  and your body creates antibodies to fight this virus.  in some ppl, they never have mono, but in others they can have chronic mono.  the mono would not be causing the neurological problems.  however, epstien barre can cause other issues.  one of the issues is a syndrome called guillian barre syndrome and it is an autoimmune disorder that eats away at the mylan sheath of the neurons causing many many problems.  your mylan is a fatty tissue that helps aid in the reception and transmission of neurotransmitting chemicals which travel from nerve cell to never cell telling your body what to do.  any variation in the mylan sheath, causing problems with the nerves functioning properly.

so now we have a possible answer.

it’s really an odd feeling to be excited about having a life-long neurological autoimmune disorder.  it’s not something that you want to have, but at least it’s something, and i am not insane.




  1. Pingback: My functional neurological disorder. | victoriagoodlad
    • tlohuis · October 5, 2013

      I’ve been diagnosed with a long list of chronic diseases that I’ve actually been tested for and had positive results, bottom line is, is an autoimmune disease causing all this shit, but they can’t figure out which one and won’t label it. My first hematologist said I should be considered for a serologically negative lupus because all my symptoms are compatible, but no rheumatologists will see me. I call and once they hear fibromyalgia they say we can’t help you, sorry. Excuse me, but a rheumatologist is the type of doctor that is supposed to treat fibromyalgia. A rheumatologist diagnosed me years ago, but he’s retired now and I’m tired of calling rheumatologist after rheumatologist just to be turned away. I’m pretty sure it’s lupus. I’ve had some questionable lab results, I’ve read a book on it, I’ve done a lot of research. It’s not that I want to have lupus by any means, but I want the proper diagnosis that is causing my body to attack itself in so many different ways so I can get the proper treatment that I need. It’s very frustrating. I’m glad that, at least, you finally got a diagnosis, even though it’s not a good one. It’s just a relief to know what it is. Take care and I wish you the best on your journey.
      Peace 🙂

what's on your mind?

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s