Monday, February 5, 2018

diagnosisNOdiagnosis

I'm losing my mind.

Yesterday I went back to the gastro doctor, and he said again (I saw him two months ago) that he doesn't think I have IBS, no matter what Dr. Ezra said. He ordered more tests; an MRI of the intestines, and a few more stool tests that weren't done.

Then later in the afternoon I went to Jerusalem to see my osteopath who I hadn't seen since last spring. I told him what was going on, and he decided to do accupuncture rather than an osteopathic adjustment like he had always done in the past. Because this problem isn't skeletal like my other problems, this is gut problems. He is well trained in accupuncture, and did a treatment. I'm sure it's going to need a series of treatments to have an effect, but almost needless to say I feel no effect.

Do I have the strength to keep going to Jerusalem for more treatments?

WE DON'T EVEN KNOW WHAT THE PROBLEM IS!!!!!!!!!!!!!!!!!!

I'm in pain constantly (unless I'm sitting comfortably or lying down), and I'm really losing it emotionally.

Everyone has different recommendations for me... the dietary decisions are mind-blowing. I can't do any of them. I literally cannot do any special diets, or make any decisions at all.

I don't think I've ever been more confused in my my life.

The world keeps going on, but I am less and less in it.

How am I going to figure out what is going on?

Now people are trying to convince me that the mesh & clips in my abdomen holding me together may be the culprit. But it can't be taken out without major reconstructive surgery, and muscle transplant. It's about the size of a child-size violin.... not a tiny piece of mesh we are talking about here. And there is nothing there to take it's place, you can't just remove it and expect my intestines to stay inside my body, because they won't. A thin skin graft is not enough to hold my guts in. That would be a whole lotta high risk surgery for unsure results. 

Let's hope the tests the gastro ordered will show up something.
They haven't even passed the approval of the kupat cholim (HMO) yet, so it'll be a while before I actually get them done. An MRI can take sometimes a month or more to get scheduled.

I just have more pain to look forward to. 
I have to finish my translating for the medical documents for the mayo clinic. I don't know if I'll go there, but I should apply for dates anyway.

I'm in such a bad place.

4 comments :

  1. I don't have any words Sarah. Just know that I'm listening.

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  2. hugs and hugs and more hugs. I am so sorry you're going through this. I wish I had something helpful to offer.

    Did you ever watch the show House? Wouldn't it be so amazing if there were an actual team that took hard-to-pin-down cases and dealt with them? I mean in israel...

    *sigh*

    I hope that this mystery mysteriously disappears very soon and leaves you feeling super duper.

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  3. Hi Sare, sending you lots of love and prayers.

    I wonder about the Sarno-method doctor, maybe in the interim until you have the gastro results and MRI you could focus on mind over matter methods that worked with your back years ago?

    Sending you (gentle) hugs.

    Dev

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  4. As it happens, one of my favorite podcasts, "Reply All", this week rebroadcast an episode about a woman who started experiencing many mysterious symptoms. In her quest for a diagnosis, she eventually tried a website called CrowdMed. It's a good listen, and some of what she goes through will probably sound familiar to you: https://www.gimletmedia.com/reply-all/36-blindspot-rebroadcast. Hope this helps in some way!

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