normal test results - somehow frustrating!

[redmaggie]

I should be glad that my lung function tests this week are called normal - but I certainly don't feel or function normally! Is it wrong to feel upset that symptoms are not validated by the normal label? I just feel confused and now expect to be dismissed (as a hypochondriac?) at the next review

I had a bad bout of TB 15 years ago and have a lot of fibrosis as a result. so I have had checkups in the past and now more as I have UCTD (anti-Ku antibody). I've had lung function tests at 3 different hospitals, the last 2 are quite different - somehow my function has much improved in several areas (in only 9 months) despite my actual measurements being lower. it must be that the "normal" references I'm compared with are different. When I look at the test result printout, I can see that my measurements on the graph are below the normal range. sorry for the detail but i'm trying to make sense of it all.

I will have to wait until my appointment with consultant in January, not too long. I know a fair bit about the science but of course its complex and needs interpretation. thanks for reading this and allowing me to moan. best wishes to all.

[MusicalFurbaby]

Hi RedMaggie, sorry to hear of your troubles. It’s absolutely normal to be frustrated by ‘normal’ results! I certainly feel that way. It’s crushing to be enduring all this pain etc., only for doctors to look at your results and conclude there’s nothing wrong with you. We all know that you don’t have to have positive results to have a disease, and that a wide range of diseases will never show up on a scan or blood panel. Still, it’s nice when the test results align with our lived experience of illness. It gives us some credibility!

All the best with your upcoming appt. Let us know how you get on. And do feel free to vent here anytime!

[redmaggie in reply to MusicalFurbaby]

thank you for your encouraging reply. I am feeling calmer this morning -there are logical questions I can ask at the next appointment. If two tests give different answers then they cannot be reliable.

[MusicalFurbaby in reply to redmaggie]

I have found that repeat tests often yield different results; this is often the case with lupus. It’s not so much the tests are unreliable, it’s more that lupus is ‘unreliable’ in that it constantly fluctuates. They should be repeating the testing over a period of time to see what patterns emerge. Good thinking re: taking a list of questions to your next appt. Glad you’re feeling calmer too. All the best!