I am being stalked by the wolf - and it's a relief to find this out.

[hedgehog]

I've been struggling for many, many years with assorted vague symptoms, mostly fatigue and muscle weakness. My family doctor looked at my hands at my last check-up and ordered a series of tests. I'm coming up positive for lupus, and will be seeing the rheumatologist.

I say this is a relief, because now I know that I'm not lazy, that if I am having problems it's not because I'm a couch potato. I'm not, but when I can walk my dogs easily one day and have problems the next, it's nice to know that it's not my fault.

[mopinko]

1. docs don't get this.

they are always beaming a little when they give you a negative test result. nobody wants the bad answer, but most of us what the correct answer. negative test is not an answer.
i had a positive ana- an elevated ssb. although i have a lot of symptoms large and small, i still have no conclusive answer. i have given up looking for the time being. if something really goes wrong, we will look at it again.

i am, however, seriously considering doing a gene mapping for myself and my 2 daughters, who also have problems the docs can't quite put their fingers on.

[hedgehog]

2. I"m not a doctor- but I was just reviewing the complications of CREST syndrome

and realized that that was a good match for what killed my mother. She made it to 84 years, so it's not a real worry, just a frustration.

[NightWatcher]

3. I was told "congratulations, you've got SLE lupus in your kidneys, and liver."

"you'll be permanently disabled". This was almost three weeks ago. Then a week later, "the results from your muscle biopsy show you've got dermatomyositis and that alone is enough for you to get disability from social security"

Freakin "yay"? congrats you're life just got shortened and the quality of that living got severely downgraded?

Whoopie, we're all gonna die?

I'm waiting for followup with a Primary, Rheumy, and after the latest diagnosis most likely a Neurologist.


Sure it's good to have a name for the symptoms and to know that its not in your head, but when they are happy they found ou what it is and they portray that as being happy that you have a horrible chronic illness it kinda just leaves you feeling "huh?"

[Warpy]

4. The average time from diagnosis to death used to be 7 years

Now with careful management, lupies can have normal life spans.

I know what you feel about that sense of relief, though. It's great to find out it's not a personality problem or moral failing, you're just really sick.