Comments on Heaven in My Foot: Tilt Table Test

Thanks for all the comments. I hope to continue t...

2008-10-12T07:12:00.000-04:00

Thanks for all the comments. I hope to continue this tale soon. The next part is nebulous and hard to tell, and I think it also makes me sad. Once I get into it, I'll be pleased to be making something out of the mess of memories.

best to all,

Priscilla

I was googling "tilt table test" (because I have t...

2008-08-13T16:34:00.000-04:00

I was googling "tilt table test" (because I have to go for one tomorrow), when I came across your blog. I too am very frustrated with the doctors guessing and seemingly belittling of how I know my body feels. I went to the doctor with lightheadedness and a pressure between my ears. I could prevent fainting by taking slow deep breaths and by sitting/laying down. The internist referred me to an ENT, who said nothing was wrong with my ears and ordered an MRI. When it came back with a few "white spots", she suspected MS and sent me to a neurologist. The neurologist reviewed the MRI and said, no it's not MS. He did a few autoimmune tests and sent me to a Rhumatologist (because of a positive ANA test). The Rhumatologist did more tests and ruled out lupus and other autoimmune disorders. She sent me back to the neurologist who is did a spinal tap (which sent me to out-patient surgery for a blood patch). He further confirmed no MS with the spinal fluid tests, but couldn't find anything else either. While in his office, his nurse checked my blood pressure and found it significantly different when I was laying from when I was seated. Now he's sending me to the cardiologist for this tilt table test. I think that some of the most frustrating things are: never feeling "well", exhaustion (although dr found Vit B 12 deficiency so I'm on tablets to help with that), fear of fainting in public, waiting between tests for results, and being accused of letting stress get to me. I'm only 34 years old... I don't have time to be "sick". Thanks so much for your postings, and I encourage you to keep us posted with your journey!
Paula

Wow, Priscilla thanks for leaving your comment on ...

2008-06-06T12:36:00.000-04:00

Wow, Priscilla thanks for leaving your comment on my dysautonomia blog. My dys came on relatively suddenly 6 years ago, I suspect because of injections in my spine but really it's anyone's guess.

I've found the forums on www.ndrf.org very helpful. Are you on there? LOTS of good dysautonomia folks there. Highly recommend.

I like how you describe the divide between your experience and the doctors' conceptions of it. How eloquently put.

Marie aka Mynagirl

Please keep posting. I have a partner who is exper...

2008-05-29T10:20:00.000-04:00

Please keep posting. I have a partner who is experiencing many of the same symptoms -- and getting many of the same goofy treatment from doctors. I would like to hear more.

What a story. And you're right that it's a story ...

2008-05-23T10:43:00.000-04:00

What a story. And you're right that it's a story that isn't over yet. You could get better or you could get worse: and while those of us reading this care, no one is more concerned with the outcome than you and your immediate family. There's a huge question mark hanging over everything.

One thing that I can actually understand better -- I don't pretend to understand the pain and anxiety and sheer weariness of long years of sickness -- is your fear of being taken for a hypochondriac. Right from the start I could understand this, I could understand why you'd be really concerned that people might think you're making it all up. For whatever reason, I feel as if I understand that perfectly. While all the pain and apprehension and exhaustion I can only understand in the abstract, as things you describe to me and not things that I know myself, the fear of being seen as a neurotic who only imagined the whole experience rings true to me. I know without taking thought why you'd want proof that you were ill before you were to get better.

In theory, I know that this is unfair to all the people who imagine that they're ill. In one sense, you could say that they're not imagining anything: their illness is merely mental and not physical. They have a problem too, just a different one. And yet it feels like I understand perfectly why you would not want to be classed with those people. It seems perfectly comprehensible that your desire to get better be rivaled by your desire to document the reality of what you went through. Even if you were to put all the years of illness behind you -- something that has not been promised -- you'd still want people to know that all you went through before is real.

As I said, I can't appreciate half of what you've gone through, but for some reason I think I understand this. Thanks, as always, for writing.

Brendan

Wow. Thank you, Priscilla.

2008-05-18T18:59:00.000-04:00

Wow. Thank you, Priscilla.