Health diagnoses

[asjr]

Is there anyone here who has had lupus or knows someone who has it? I found out last week that I have, for years, been misdiagnosed about health concerns.

[ensho]

1. knew a woman who went through hell cause they thought she had lupus

medicine that nearly poisoned and blinded her, etc.

she finally went to Mayo and they said she did not have lupus and gave her some meds that cleared up the problem right away.

she suffered badly from the lupus meds for a number of years.

[asjr]

4. Thanks for replying. I have been

misdiagnosed for years. And it is lupus. No one caught it. I had been having trouble breathing and could hardly walk. This had been bothering me for years. Finally, I found a doctor who suspected it was lupus. He had me get a cat scan of my chest. Lo and behold, my lungs had shrunk until they were half the size they should have been. I am now on oxygen 24/7. He said he couldn't understand why I had not already keeled over dead. Lupus is a sneaky disease!

[NV Whino]

2. Get another opinion

I, too, have a friend who was misdiagnosed with lupus.

This is too serious to not fully investigate.

[Warpy]

3. Proper diagnosis by a specialist is key

It took me 13 years to get diagnosed because of the prejudice that young, cute women didn't get that sick.

There are some pretty specific immune tests they have now that make diagnosis a little more certain and help them design appropriate treatments. Symptoms, severity, and disease course vary widely from individual to individual, something that's made it difficult to diagnose in the past.

The right medication can help lupies live a reasonably normal life. However, as you know, the disease comes and goes and has a mind of its own. Some weeks you'll be a ball of fire, then all of a sudden you'll feel like a dishrag. Learning to roll with the punches is key.

The average time frame from diagnosis to death from lupus was seven years just a few decades ago. I won't sugar coat the medications, some of them are ugly. However, most lupies can have a normal lifespan now and many can control their symptoms with over the counter medications like Motrin.

Here is the Lupus Foundation, with information and support: http://www.lupus.org/newsite/index.html

Web MD has a good information page for patients: http://lupus.webmd.com/

[asjr]

5. Thank you. More information is always

needed when something like this happens. I have become quite the philosopher in my old age so I will muddle through. I will still complain however, because no one deserves something like this sprung on them. I love my new doctor.

[ensho]

6. wishing you well - hugs

nt