When you have a name for the disease that is taking away your “normal” it gives you the ability to cope, some hope for treatment or a cure, and eventually a sort of peace

I have lived undiagnosed before when I was on my CRPS journey so you would expect it to be easier the second time around. That’s not the case.

The land of undiagnosed is not a place I thought I’d return.

I have not eaten in almost a year

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When you have a name for the disease that is taking away your “normal” it gives you the ability to cope, some hope for treatment or a cure, and eventually a sort of peace. Just a name can provide you the perseverance you need. When you are undiagnosed there is unexplainable deep frustration and doubt (in your symptoms, yourself, and in your physicians). Are your symptoms real? Are your physicians even trying to find a diagnosis or treatment? Do your doctors believe you? Why is this happening to me?

The past year I’ve been in the land of undiagnosis. Due to the lack of definitive diagnosis it’s been hard to convey to others “what is wrong with me” when asked. No one wants to listen to you rattle off your million and one symptoms, but also an answer of “I don’t know” is insufficient.


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I have not eaten in almost a year, lost 40 lbs, have severe pain with oral intake, vomit any oral consumption, have GI issues. I have been diagnosed many times, each disease or syndrome not quite fitting. I have had countless procedures and 3 nj tubes (naso-jejunum tubes) before my “permanent” J tube (jejunum tube) was placed.

I have tried supplements, essential oils, gluten-free and dairy-free diets, seen functional medicine doctors, traveled to the famed Mayo clinic. I have tried med after med after med. I have had MRIs, CAT scans, eaten irradiated eggs for a gastric emptying study, endoscopies, a colonoscopy, so many vials of blood tested. And I still can’t tell you what is wrong with me.

I’m living in the land of the undiagnosed just a bit longer.

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3 thoughts on “Living undiagnosed.

  1. Ditto for me. I am back to undiagnosed land for my vestibular disorder. More tests and more tests and more tests. And speculation. And who the hell knows? But I have been stuck in this hell for over 2 years now incapable of driving or working with low functionality… and I am sick of it. I want a label and I want treatment. I hate undiagnosed land.

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