Functional Neurological Disorder - FND Hope
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Alas, more clean tests

I moved to a place with compassionate doctors. They’ve been doing tests.

One by one, they’re coming up clean. I was a serious alcoholic for about a decade, and despite the intense pain below my right rib cage, there’s no damage to my liver, gallbladder, pancreas or kidney.

I should be happy that these tests are clean, but I’m not. There’s still no explanation for my seizures, besides plain ol’ FND.

But, testing is good. It took over a year to convince a doctor to do any.

I guess that becomes the following advice: whatever your symptoms, if you can break them down and go to the doctor for each one, they might be more helpful? I don’t know. I feel myself slowing getting sucked down into a toilet as I try to understand why the pains I have produce no “organic” problems that current tests can find.

It can’t get much worse, I suppose. I completely cracked mentally last year. This disorder drove me insane. I have 33+ personalities now where I used to have about 5... but I won’t complain about having more friends!

EEG, Wilson’s and Huntington’s tests are pending. After that? I’ll m still hoping to have Hugh Laurie hobble in and figure out what’s wrong with me instead of just sitting here growing increasingly bored and obese.

I keep pondering getting a job, but I don’t want to jeopardize my pending SSDI application. I also don’t want to get to a job and go postal from my rage attacks. I’m that close some days. But I’m fed up with sitting at go me all day long, hallucinating, having seizures, speaking in tongues...

FND... why do you hate me?

2 Replies

Tests are not the issue. Even if they could.put a label on it doesn't mean that they could sort it for you. They don't cure an awful lot of neurological problems by writing a prescription for you. You might find something you didn't want to know (how does an untreatable brain aneurysm grab you, as an example? )

What that means is, whatever it is (and you may as well just call it 'whateveritis'), you are on your own in dealing with it. But fortunately you are your best expert. No-one else, however qualified they think they are, is as good as you.

So watch and monitor yourself. Rest and recuperate and treat yourself - in all senses of the word. Identify what helps and do more of that. Find out what triggers flares and relapses and avoid that at all costs. Take meds or use alternative therapies that will ease troublesome symptoms. Eventually you will find you are managing the condition amd it is no longer managing you.

But don't be hanging out for a test that will give you a magical label to make it a go away, or for some wonder medic to come along and sort you out. That is not generally the experience of those with FND. Those who do best managing the condition are those who take control. And the good news about that (as with clean tests - for which you need to shout hurrah, by the way) is that anyone can do it.

1 like

I’m only after the tests because I’m too sick to work and can’t live alone anymore, but SSDI denies me. So I’m stuck looking for evidence. With no money coming in anymore, I’m not sure what I’ll do when my 401(k) runs dry in a out 9 months. If it wasn’t for SSDI, I’d simply rest, because that’s about all I can do now.


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