extensive blood work from the lab. He told me that he did
not want to prescribe anything until the blood work was in. He had
suspicions but he explained diagnosis is often a long road. A little
discouraged I went to the lab and had the blood drawn. I was told it
could be 10 days or more before all the results were in.
I began to research my mystery diagnosis while waiting for
new test results. I read how similar all my symptoms were to what I
was reading and began questioning my doctors and my family. After
digging into some blood lines – I found Tuberculosis and Lupus
diseases in family before me. One cousin was still battling with
Lupus. I began to recognize very clearly what was going on and took
the info back to all my doctor appointments.
When the tests results came in we confirmed that I had
inflammation and
Antiphosphilipid syndrome. Still, that is not the answer I was
looking for.
Antiphosphilipid syndrome surely did not cause all this by
itself….
A couple more months went by.. I was not sleeping well, pain
in my legs was getting unbearable, the pain in other parts of my
body was making me irritable, I could not think, concentrate and my
hearing was getting worse. I thought that every day would be my
last.. I began to “get my house in order”. I did not want to die
without having things in order so my family could easily find what
they needed.
My next appointment with my rheumatologist frustrated me as
I spoke about my findings and my pain/symptoms. He explained how he
suspected Lupus but it is very difficult to diagnose and we needed
more time. I thought what??? I did not think I had any more time…..
I scheduled an appointment with the Center for Rheumatic
Disease , Allergy and Immunology here in Kansas City. I wanted a
second opinion of what was happening to me. I saw a professor there
who was highly respected in his field. This Dr did a thorough
examination, took a family history and too ordered a long line of
blood tests… Again, I had to wait 10+ days for the results to come
in.
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While waiting for the
blood work to come back in I had to have cortisone injections in my
knees to help with the pain. My rheumatologist was treating me for
Lupus now (even without confirmed blood work) and doubled my Imuran
to help fight the inflammation. The Dr at the center for Rheumatic
Disease explained to me how the tests confirmed my suspicion of
Lupus. I had Systemic Erythematosis Lupus or SLE. Along with that he
also diagnosed Secondary
Fibromyalgia and confirmed the previous
diagnosis of
Antiphosphilipid Syndrome/AIED. I cried – I was so frightened. I
did not know what was going to happen next. I wanted to be strong
but this was overwhelming. Would I not see my grandchildren grow?
Would I not see tomorrow? Did I tell my husband, children and
grandchildren enough that I loved them? So many thoughts went thru
my head at the same time…
I was mad at the world. Why was this happening? Why was I
miss-diagnosed for over 10 yrs with a B-12 deficiency and taken all
those shots for nothing? I wanted to crawl the nearest mountain and
scream to the tops of my lungs.
I was in the highlight of my career and now I knew what was
affecting me at work. Long story short --- after reduced hours and
responsibilities I became unable to perform my required duties and
ultimately ended up on short-term disability. I went from working
5-6 days a week, 12 hr days to not being able to work at all.
I have gone from being able to walk to needing the assistance of a
wheelchair for any distance. I used to love to walk.
I am currently on Warafin, Azathioprine, Amitryptylan, pantrazole,
Vit D, Simvistatin, Metroprolol, Prednisone, Cycobenzaprine,
Neurontin, Lidoderm pain patches, 3 types pain pills as needed, eye
drops and steroid creams. The side affects of some of the meds I am
on is enough to scare you. From weight gain, internal bleeding to
causing cancer or tumors makes you feel like a ticking “time bomb”.
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