If you have lupus, what were the very early symptoms? Were

[hedgehog]

they visible to other people (joint inflammation and swelling, rash) or were they invisible (fatigue, joint pain)? Looking back, can you see that you were showing symptoms long before you realized something was wrong?

[w8liftinglady]

1. fatigue,confusion,seizures.No "physical" signs.

I guess I knew there was something wrong for over 2 years.Took that long for the docs to run an ANA on me.

[hedgehog]

2. I'm looking at a college kid who I now realize may have exhibited early signs for years;

it's just now reached the point where she can't compensate/cover-up. I think that's a pretty typical reaction, she was just too busy to be sick. We haven't had a diagnosis yet, but one sister had JRA and another has lupus.

[auntAgonist]

3. I tested positive ANA

but no sign of Lupus. I saw a rheumatologist <sp> a number of years ago and he just dismissed me. Said there was nothing wrong. I've tested positive again twice in the last year. I have no symptoms so I'm just taking a wait and see attitude. I'm 52 btw.

aA
kesha

[hedgehog]

4. It's frustrating for both patient and doctor to be presented with

invisible symptoms that can't be cured. Our own doctor said that if he hadn't treated the kids for years and hadn't known the family history of auto-immune disorders (add asthma and allergies to the list) he wouldn't have known what was going on since there was absolutely no sign of any problem. We go back tomorrow to get the results of the blood work. Last year she had a negative ANA, which means absolutely nothing.


Medical training is as much apprenticeship as anything else. Some doctors are still trained that if they can't see it or touch it, it doesn't exist. Others have been chastened by what happened when Chronic fatigue disorder first emerged 20 years ago.

[mopinko]

5. waitin and seein here too.

i am 55. been ana pos for several years now, moderate fibromyalgia, pink puffy patches on my face, but no kidney or heart problems. :shrug: i guess if it was going to kill me, i would know by now. sure wish i could get through the day without needing either a pain pill or a nap, tho.

[auntAgonist]

6. I hope you continue to be well too. I have had a few

things go on in the last few years. Most recently a bout of pneumonia and then pleurisy. I have rosacea on my face that's treated with Finacea and tetracycline 1000mg a day. Way too much antibiotic but if I go off of it my face is a mess. I have iron deficient anemia and get iron infusions every few months. I do give myself b12 shots and that's helped a fair bit.

I take approximately 45 supplements a day divided into 3 doses. I take that many because I had weightloss surgery and the malabsorption portion of the surgery prevents me from absorbing what I need from just a multi vit and good eating habits. I knew that going in though and I'm doing very well. I feel fortunate that I'm as healthy as I am. Prior to WLS I was pre diabetic, had back, leg and hip issues, migraines and high blood pressure.

Anyway, sorry, I got off on another tangent LOL.

I wish you well.


kesha.

[marybourg]

7. Navy blue fingers. Really. nt.

[auntAgonist]

8. ? as in circulatory problems?

I have Reynauds which makes my fingers go numb, icy cold and white then blue. Is that what you're meaning?

:)

aA
kesha

[marybourg]

10. Yes, but so severe that they were navy blue 24/7

in August in AZ.

[hedgehog]

9. We're a family that has a lot of chronic diseases, but our

attitude is to avoid all the drama and get on with life. As a consequence, We have a habit of putting up with symptoms that other people would run screaming to the the doctor about (and rightfully so!) I asked my daughter if her hands turned color in winter, and she said her fingers go dead white.

I don't know if I'm collecting the information that the doctor needs to make a diagnosis or selecting the symptoms to tilt the diagnosis to lupus.

[auntAgonist]

12. dead white is definately something to mention, it's how

mine go too. They ache terribly when they 'thaw' out. It's summer and just the other day my hands were white and numb. My hematologist said it's Reynauds Phenomenon. I'd never heard of it.

http://www.medicinenet.com/raynauds_phenomenon/article.htm

What conditions have been associated with Raynaud's phenomenon?

Raynaud's phenomenon has been seen with a number of conditions, including rheumatic diseases (scleroderma, rheumatoid arthritis, systemic lupus erythematosus), hormone imbalance (hypothyroidism and carcinoid), trauma (frostbite, vibrating tools), medications (propranolol , estrogens without additional progesterone, nicotine, bleomycin used in cancer treatment, and ergotamine used for headaches), and even rarely with cancers.

[Warpy]

11. Extreme fatigue, red face, easy sun poisoning, sore joints, protein in urine

[hedgehog]

13. It's funny the habits you can pick up. I have so many trees planted around

my house that I feel naked anywhere else. I never leave the house without a hat. My kids picked up my habits and never were sunburned until they were away at college. I guess what I'm saying is that we have learned to stay out of the sun.

[w8liftinglady]

14. I'm kicking this because I have a question

Has anyone here been diagnosed with Lupus Cerebritis?My IM doc thinks that may be causing my seizures/altered mental status.I'm going to a large university seizure center in a few weeks.
http://www.checklupussymptoms.com/lupus-cerebritis.html