Sunday, February 19, 2017

Step Three: Never Accept The First "Diagnosis"

In my completely unqualified opinion, the third step in understanding your pain is to never assume the first answer is the only answer.

I finally have some answers. But, Lupus? Really.  It just doesn’t seem to fit? I had blood work done every 6 months and the doctor concluded that it must make sense.

So let's look back to the Mayo Clinic again, this time for the the symptoms of Lupus. They are as follows:
- Fatigue and fever – sure, I don't sleep well so that could make sense
- Joint pain, stiffness and swelling –yep, that’s why I am here
- Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose –okay, no this has never happened!
- Skin lesions that appear or worsen with sun exposure (photosensitivity) –yea, that's a no too!
- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon) –cold but not discoloured?
- Shortness of breath –never…
- Chest pain –nope!
- Headaches, confusion and memory loss –but mine are completely hormonal 

So if you are following me here…those symptoms do not follow my original complaint: BACK PAIN. Can someone please explain this to me.  I understand my blood work tells a picture of one thing—but I am here for another!!

So I asked my specialist:
“Could this explain my back pain?”
“No, that is completely unrelated. Your back pain is mechanical”
“Okay…….so then why am I here?”
“To fix the Lupus and auto-immune issues. Try this medication and see me in 6 months”

Do you see a pattern developing here? I am here for my back pain, yet no one is explaining the cause. It’s mechanical.  Umm, okay? Can you fix it? Give me tools? Without medication? HELLO!?

This went on for a year and a half. I would return she would ask how the medication is working? I would explain that there are no changes and that I was still in pain.  She would reiterate that my back is not connected..yadda…yadda.

Finally, one of my last trips to this specialist, I mentioned that my hips were not starting to cause me pain. She explained that she would send me for an MRI to see if there was any cartilage damage (or something like that) and see if this help clear up any disbelief about the Lupus diagnosis. Sure enough, my hip issue is an issue.  BUT–it too is mechanical and happens to also be completely unrelated to the Lupus. Okay, seriously? She explains in her thick accent and medical jargon something about a “Femoral Acetabular Impingement. This means nothing to me.  She tells me that it is not a major concern right now; however, in time if pain became problematic or regular, I would have to see a orthopedic surgeon.

Let’s recap:
Lupus diagnosis based on some blood work abnormalities but not other definitive symptomology
Fibromyalgia..but not fibromyalgia
Headaches and migraines associated with hormone levels
Back pain since childhood
Infrequent hip pain recent onset
Digestive issues (not discussed often..because well, who doesn’t have digestive issues these days!)

NOW WHAT?! Her response....
“Keep taking your medication and I will see you in 6 months. Oh and don’t forget, more blood work!!”

I had continued to see that old specialist for months.  Took her medication.  And nothing…. so I requested to change specialists.  Lucky me! I got a person whose bedside manner was much improved from my previous option; however, the answers were no better.  He told me that it’s 100% not Lupus.

SO? I asked, “what is it”?

“I DON’T KNOW” The answer I’ve been given 1000 times.  How do you specialize and not know? I know, I don’t give them enough credit.  But if you sat in my appointments you would think they don’t try hard enough.  I am 30 years old and have the body of an old woman.  But, I am young! and still have flexibility…therefore, nothing is wrong.

Still no answers.

Then, May of 2015 hit.  This year was supposed to be a great year.  I was getting married in July and everything was going smoothly.  Unfortunately, for some unknown reason I woke up in excruciating pain.  I didn’t even see it coming. I was trapped within my body.  I couldn’t get out. I called my specialist and it took a trip to the hospital, an injection of medication, and harassing his secretary for him to see me. I go in and he has NO answers.  Just orders more MRI’s, this time of my back.  
Well, it’s about FREAKING time
These take months to get into-- YEY CANADA! Once I finally have the scans and the results back, nothing is definitive.


So that is step three, trust your gut and seek a second opinion. Especially if the first opinion sounds like they are describing a completely different person.
Got a confused diagnosis story? I would love to hear it, leave me a comment so I can share in your misery? Confusion? or whatever you want to call it. 

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