Forget the Facebook timeline! My AS Timeline!! By Meloni

Having your rheumy tell you she might send you to a neurologist makes you think…hmmm I’ve seen one!  What was his name?  Where are those records.  The AS in the neck is pretty bad lately so, I got to thinking, when I fell down the stairs is when all this started!  So, let’s back up a sec.

In Jan of 2006, I took a nasty fall down a flight of stairs.  The good part was I was on my “rear” the entire fall, bumping down every single stair.  I did fling my right arm trying to stop myself—didn’t work.  OK-here goes-numbness in right arm was pretty bad.  So, my primary care (PC) Dr sent me to a neurologist.  After tons of tests, and seeing the ortho Dr at the same time, it was decided I’d have shoulder surgery.  STOP!  I now have the records (yes, in 2012) from the neurologists.  I’d like to share his “impression” of me–I guess that’s his fancy word for diagnosis.  OK–typing exact as my records state– “CERVICAL SPONDYLOSIS with disk disease”–first words he writes.  My MRI-at that time, he writes C4-5 asymmetrical bulge and narrowing, C6-7 and C5-6 protrusion.  SAY WHAT???

Not one doctor told me this in 2006.  NOT ONE!  I had shoulder surgery.  So, did I really need shoulder surgery? hmm makes you wonder doesn’t it.

Here’s my quick AS TIMELINE Jan. 2006-fell down stairs and started seeing neurologists and ortho dr (did physical therapy)

May 2006-diagnosed with spondylitis (but they forgot to tell me)

Nov 2006-Shoulder surgery (because I wasn’t getting better-duh?!)

2007 I don’t have records from this year–and memory is well…gone

2008-started having pain in ankles I could hardly walk and fingers were so swollen and painful.  Referred to Dr. Alan Gottlieb.  His diagnoses (have his records)–he says HLA-B27 positive but no signs of AS–fibromyalgia.  WHAT THE HECK.  Wouldn’t send my dog to this doctor.  Felt violated at the 1st visit.  So for the next year excruciating pain and a fibro diagnoses from Dr. Quack!  If you’re wondering HLA-B27 is the AS marker!!!

2009-I’m at my PC and she’s seeing how I’m doing–not good, now let’s add more joint pain (lower back)–ok, let’s re-read that statement–I said JOINT pain.  Not muscle aches.  Learn the difference Dr. Quack.  PC says, you don’t have Fibro–you have ankylosing spondylitis–ankah what?  Yes, this is the 1st time I hear these words.  So for 3 years, I’m NOT being treated at all for what I have.  Can we even back up a bit more and say this runs in my family.  My younger brother has it and already has both hips replaced and that I TOLD THE DOCTORS THIS!  She refers me to another rheumy.  Dr. Paul.

June(ish) 2009-Dr. Donna Paul starts treating me for AS.  I’m immediately put on methotrexate (yum) and then we add humira.  I start seeing some improvement.  Now, don’t get excited, I said some.  I’m feeling better just knowing what I have now.  Even though there is no cure and it’s a degenerative disease.  I see her for several months into the beginning of 2010 then—All the sudden Dr. Paul is gone—just left.  I liked her.  What the heck.  Where’d she go.  I’m here for my appointment.  The doors are locked.  I mean she up and left!!!  Give me my records!!!!!!!!!!!!!!  Tell me something!!!   With no records, nothing, it’s off to find another rheumy.  I’m at her office for my appointment and she’s GONE!

May 2010-I see Dr. Elizabeth Butler (Emory).  I tell her what I can and I’m on humira, etc.  So, we start over.  I like her too!!!  So, glad to see a Dr who “knows” AS.  Who cares.  She’s not happy with my AS and switches me to enbrel/methotrexate and tells me that I have an aggressive AS.

In the beginning of 2011 I stop all work and try and get this disease under control.  In March of 2011 I start Remicade infusions.  I’m finally feeling I can “do life”.  No mind you “doing life” is totally different than my “doing life” before AS.  Insurance change–out of network–WHAT?  Please no.  I don’t want to change doctors.  I pay out-of-network fees until the new rheumy can see me (November 2011).

2012-Today–numbness in right arm is back.  Headaches all the time…could this be the neck?  hmm  Could my AS have been slowed in 2006 if I’d been given a diagnoses and medication?  There’s more to this story!  It’s my story.  My life.  I’m in charge.  Thinking I’ve found Dr. Paul in Alabama—trying to get in contact with her.  I WANT MY RECORDS.  They are mine.  Where are they?  In a dumpster somewhere?  Dr. Stark, new rheumy, I’ve not made my mind up about him just yet.  I just wish I could stay with Dr. Butler.  We’ve upped the remicade and it seems to be working for now.  My eye is better.  Now this neck and headaches.  oh, and shoulder pain and numbness in the right arm.  Well, going for a MRI of the neck.  We’ll compare with 2006 and see where I’m at today.  For now–I wish my insurance hadn’t changed, but thankful that I have it.

To all of you—YOU are your Dr.  Get your records.  They are yours.  Stay on top of your health.   And don’t keep your disease a secret.  I did for a few years.  I think mainly because I didn’t know what I had.  So, I kept the pain a secret.  Now, I know ankylosing spondylitis (AS) and read about it and talk about it…seems the more I know, the more I learn doctors don’t know that much.  It’s not your grandmothers arthritis folks.  Don’t act as if we all have it when we get older.

I have auto-immune arthritis/ankylosing spondylitis disease.  It may be invisible to you, but to me, I see it 24/7.

AS has my body, but not me.

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One Response to “Forget the Facebook timeline! My AS Timeline!! By Meloni”

  1. Nikki Bass Says:

    OMG…I felt like you were telling MY story. I have gone down much of the same road. I am on 900MG remicade infusions every six weeks and a slew of other meds. I was diagnosed in February 2010 and told then that I had been symptomatic for 4-5 YEARS…YEARS without a correct diagnoses. I hurt 24/7 and bc I am not maimed on the outside no one seems to notice. Makes me want to SCREAM!! Thank you for telling your story…thank goodness for the link to your blog. Hoping for brighter days for both of us!

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