How Important Is a Diagnosis?


I enjoyed a talk with my mother the other day.  We live almost 6 hours from one another, so Facebook and phone calls are the way we keep our relationship tight-knit.  She was talking about her Graph vs. Host disease from her stem cell transplant, and as she was describing to me her struggles, she said, “it’s a connective tissue disorder of some type…”

I empathized with her. As we knew I had some something of that nature, that I’d later relate to all of the auto immune struggles I have.  “Oh, that reminds me,” she said.  “I bet you have EDS.” Ehlers–Danlos syndrome (EDS)

Yes mom,” I said.  “I know I do.”

It’s one of those things.  A name.

I haven’t been “formally diagnosed” – but I have 5 our of the 5 type markers that they look for.  Several of my children do too.  It’s common with POTS, Postural Orthostatic Tachycardia Syndrome, a metabolic disorder that basically means people struggle with all of the things your body is supposed to do automatically.  Often times people pass out, unexplainable as to why – but I can tell you what makes me better or worse.  This is why my blood pressure doesn’t regular when I stand up – and almost pass out, or I can’t tolerate extreme heat, or extreme cold… and it’s probably partly to blame for the struggles my digestive system has.

It’s one of those things I relate to … just like celiac, or MS… but I don’t really talk about.  I’m not about “celiac awareness, or MS awareness, or POTS awareness… or even EDS awareness…”

I prefer to know they’re all inter-connected because my body is a system, but they won’t own me.

So at my appointment yesterday I asked my ND if it was ok to never have a diagnosis for some of these issues.  I mean, I know what we’re dealing with – and know how the AI process works… is that really important, in the case of some medical emergency?  Do my records need to have me labeled?  She reassured me that I am doing all of the right things, and that in the event of a crisis situation, that isn’t going to change what someone might need to do to save my life.

I thought so, but it was nice hearing it.

Then she proceeded to tell me a story about another patient of hers with MS.  The gentleman has been going to their clinic since the early 80s.  When he was told by his good friend and neurologist at KU Med that he had MS.  The neurologist said, we can go through all of the testing, and I can give you the drugs – if you want.  But they won’t make you better….  in fact, they’ll probably make you worse.  You’d be better off to go home and do all of the things your mom told you to do while growing up.  Eat right, exercise, get good rest, and take care of your relationships.”

Simple enough,  right?

But the story didn’t end there.  This was before HIPPA laws were a big deal, and remember, the neurologist and patient were good friends, so the neurologist’s wife called the patients wife, and told her, “You get him down to Riordan Clinic.  You learn what good eating means, and figure out what his body is missing.”

That was almost 30 years ago.

He lives symptoms free today.

I love stories like that…  Because I know they’re the truth.  They give me hope and remind me that I’m on the right path.  While I enjoy being in groups for support of the various auto immune diseases I battle – I really am there to encourage others to dig deeper.  I’ve met some amazing people, and been able to encourage others.  God has helped me build support group to help others learn and encourage one another in this lifestyle that is necessary for me to function.

The name isn’t any diseases… because ultimately that doesn’t make me well.  Addressing what my body needs does.

Healthy for Him.

“Be not wise in your own eyes; fear the Lord, and turn away from evil.

 It will be healing to your flesh and refreshment to your bones.”
Proverbs 3:7-8

Posted on January 22, 2015, in Truth. Bookmark the permalink. 2 Comments.

  1. I have been living gluten free for 8 yrs. w/out a formal celiac diagnosis. Even if I had negative blood work and biopsy I still wouldn’t go back to eating gluten. My doc is cool with it and after years of sickness and doctors misdiagnosing me and making me sicker I am finally healthy. Results were very quick after eliminating gluten.

    Diagnosed celiacs tend to not like me, but that’s their loss. 🙂

    • Very good. My celiac biopsy was performed incorrectly. Pretty upsetting at the time. My blood work showed low IgA across the board, so I didn’t show antibodies for any of the number of things going wrong – nor inflammation, even though my body was so swollen each morning I couldn’t move and my fingers felt like they were all going to pop. There is something to be said for common sense at some point – much of the testing doesn’t work for everyone. We have to listen to our body, when no one else is listening. 🙂

      I feel badly when people get so wrapped up in a diagnosis that they don’t realize NOT taking care of it at the root – will only lead to more auto immune disease. Masking with drugs, is a really bad idea. 😦

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