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« The absence of fear | Main | Reading The Shadow Speaker, and an update on pain »

Comments

badgerbag

Daring Els! I shall blog a bit before bed in reply...

elizabeth

Well, from my personal experience, I thought absolutely nothing could top the frustration of having six specialists all disagree. That is, until they all started to agree on something I REALLY didn't want to hear. When I started in Dec. 06 and met this oddly intuitive wheelchair PT in March 07 she told me that I should hope to have 'some sort' of definative diagnosis by the middle to end of '08. Well, that was absurd, was it? My car mechanic can figure out what is wrong with a car in 2 weeks maybe 6 tops if he is wrong the first 5 times.

I know this is going to be a ping pong/yo-yo emotion for a while and quite honestly whatever you have does seem progressive and chronic (you could always make up a name like SPLAT disorder) - oh God, how did I get in this hole and where do I dig from here: um.....okay, what I mean is, your diagnosis can't help but be part of your identity in some way, and they are messing with that (and thus messing with your head), but please find some center in which you know your medical identity and are just waiting until they are smart enough, or listen to you enough or whatever it needs enough to have the correct name produced. Which in some ways will change nothing and in other ways will change everything becuase when EMT's come or overly inquisitive taxi drivers or those 100 reasons you have to fill out "medical condition" on form you can say, "I have SPLAT" instead of the pages and pages of currently not entirely connected medically stuff except that it is all happening to YOU.

I really hoped that helped and if it didn't I apologize profusely.

badgerbag

We're on a roll tonight! Yes exactly... that is the feeling I have, that I'm in long-term mystery diagnosis land without a lot of certainty. At least my first neuro looked at me straight in the eye and said "The only way to know for sure if someone has PLS is to autopsy them." I kind of appreciated that moment.

And yeah it seems to me like i have some freaking variant of neurotic middle aged lady stress disease which you get told is Maybe Lupus or MS or RA forever until it clearly isn't, and there are an awful lot of things that it can't clearly not be and yes it's not helpful anymore to have a magic (yet likely meaningless) diagnosis. So I will forevermore treat this sort of diagnosis as a Working Hypothesis Until Disproved.

(But it IS useful and smooths the way for the inquisitive who need a slot and a peg and a truth.)

It is interesting how people on mailing lists ID themselves on diagnosis and date. For example they will sign like this:

- Laliane, New York
DX'd MS 1986
DX'd PLS 1995, HSP 2005

Usually not more than like 3 things, but it is an acknowledgement of the way the this-and-that diagnosis is meaningful in itself. A lot of people share that basic experience of being jerked around into different medical "truths" and a lot of your identity gets bound up with the communities forming around those diagnoses.


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