A Battle Not Easily Won: Part 4

house it's not lupus

OR IS IT, DR. HOUSE? IS IT??

Part 4: I go to mayo clinic and see a crapton of doctors. I have a lot of tests done. But i get answers and now I’m going to share those with you! hurrayyyy!

Off to Rochester!

Fed up, I made an appointment with the world-renowned Mayo Clinic in Rochester, Minnesota. I now lived 5 hours away from it, and my sisters were treated there. I hadn’t been there since the youngest died. It was scary, actually, to consider going back to where she had her transplant. But I made the appointment and prepared.

Going to Mayo Clinic is like… going to a Godly hospital. The doctors there give a shit about you. They take their time. They listen. They run appropriate tests. It’s also like going to a convention, but instead of panels, it’s going to tests and appointments. I met with a doctor who scheduled me to see a rheumatologist, an endocrinologist, and a gastroenterologist. They were still concerned that I possibly had Celiac but no positive antibodies. And they, like the other rheumatologist, were more concerned about my bones than anything else, but I didn’t really care. I was going to see ALL THE DOCTORS!

What the tests said:

  • Yep, you got some tissue destruction going on. Your ANA w/ reflex is still positive.
  • Wow, your creatinine (associated with kidney function, aka lupus fun times) has steadily gone up and is on the verge of being too high. But it’s not, so our systems aren’t going to flag it.
  • Your vitamin D is okay–should be a bit higher, but that’s okay! It’s normal now.
  • Your kidneys aren’t pushing out TOO much calcium. So we don’t know why you’re
  • Your thyroid is a bit slow, but as it’s been tested 2 other times and was normal, we’re going to ignore that.
  • Your bone density is still crap.
  • You have minor scoliosis in your neck, upper back, and lower back. Also, you have arthritis in your lower back. Your lungs and heart look pretty good.
  • Your joints are not swollen. They are enlarged somewhat, but not full of fluid, so it’s probably not RA.
  • Your fingers look a-ok under a microscope. You do not have enough criteria to diagnose scleroderma at this time, but there’s some crap going on that we must monitor. You could develop it in the future.
  • Your endoscopy (boy was that a fun time–I hallucinated that a lady had two heads) says your stomach and intestines are fine. You do not have Celiac disease.

And then I got the diagnosis that I simply had IBS. Okay, well that’s fine. I kinda knew that.

But here’s where it gets good.

When I was talking to the rheumatologist, he had me hold my arms out completely straight. He tapped my elbows and went,

“Huh, looks like you have a bit of Ehler’s-Danlos Syndrome.”

Wat. Is that.

It’s a genetic connective tissue disorder where your joints, connective tissue, and blood vessels are hypermobile. Now, there are a lot of different manifestations of this disorder. But it ranges in severity from “this is a pain in the ass–literally” to “your blood vessels could literally burst and kill you at any point in your life.”

COOL. ANOTHER THING.

So he did more hypermobility tests and pinched my skin.

“You have VERY soft and elastic skin. This is a very prominent symptom of EDS.”

So that other idiot rheumy who commented on it didn’t even associate it with the disorder? God, he was a waste of money.

So I made an appointment with a genetic counselor to talk more about it. That guy totally did not think I had it at first.

But the more we talked the more he said, wow, you really have a lot of minor symptoms. I’ve had joint dislocations, My vision frequently blacks out when standing up (postural orthostatic tachycardia syndrome–where your blood doesn’t flow right and your heart races when standing up.. fun acronym, too: POTS) One of the most unexplained and bizarre symptoms is the scoliosis and… drum roll…

OSTEOPOROSIS DING DING DING

So all in all, I have EDS and it caused my osteopenia/osteoporosis. IBS is a part of it. Endometriosis is extremely common with it. Cracking joints and pain is another big part of it.

My other diagnosis was undifferentiated connective tissue disease. I was put on prednisone to help with the pain. This could be the early stages of Lupus, Sjogren’s, or Scleroderma. I must be monitored forevs. I also need to have an echocardiogram to see if I have a mitral valve prolapse, which is common among EDS patients. I have some symptoms of the vascular type of EDS (easy bruising, prolonged bleeding, easy scarring) but since no one in the family has up and died randomly from an aneurysm, it’s unlikely that I have it.

For more information on EDS, go here: Ehler’s-Danlos Network

But I have answers. I have a genetic disorder and a disease that affect the same damn thing (connective tissue) but I have answers.

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3 thoughts on “A Battle Not Easily Won: Part 4

  1. Pingback: A Battle Not Easily Won: Part 3 | Inferno of Cool

  2. Thank you for sharing Heather. I know it’s not easy 😦 I’m glad you finally got more answers even though it was rough getting them. With proper diagnosis maybe they will be able to watch and monitor if it is the early stages for other things as well. We all ❤ you & care for you a lot so let us know if you ever need help with anything.

    • Ahh thought I responded to this! Sorry for the lag lol >.<

      Thank you for your kind comment ❤ I do feel better now that I have some answers. It was rough and took me awhile to write it all down, but I feel better now that I have.

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