[AnnieB3]

Annie, I'm glad you brought it up -- I think my sister might have it -- I've been talking about it for about a year.

persistent headaches -- even though she is now on 200 mg of Topamax daily
pleurisy almost constantly since she was in college (she's now 40)
nose ulcers which turn into Staph infections (she's had over 18 infections in the past 10 years)
fever (she will run a temp one or two days a week -- 99° or 100°)
she works during the week, then rests/sleeps all weekend (profound fatigue)
somtimes her legs and ankles swell and we don't know why

Is it as hard to get dx'ed with Lupus as it is with MG? Could a GP run the blood test or does she need to go to specialist?

I do know a lot about lupus. I was a designer and writer, not a staff member, for the foundation but you have to know a disease to be able to promote the funding, research and education of it! I still maintain friendships with those I worked with there, almost 20 years later.

I wonder if she has had the lupus anticoagulant tests done:

http://www.labtestsonline.org/unders...lant/test.html

Headaches can be caused by so many things. I imagine she saw a neuro to get the Topamax but maybe not. Headaches are in the realm of neuros, however, they can be caused by other body "systems" such as heart issues.

In general, her symptoms do look like lupus. Has she seen a rheumatologist?

Leg swelling can be from peripheral artery disease/occlusions. That's quite serious. If a person is having trouble getting oxygen "around" the body, they can get headaches as well. Does she ever have leg pain? Intermittent leg pain?

The best thing to do is to find a GOOD rheumatologist. The local lupus foundations usually know who are the good ones who understand lupus. Not all do. It can "flare" and a doctor who isn't as knowledgeable will discount the symptoms if the test results aren't positive right away. A good doctor will look at all the "clues" and keep following a patient if they suspect lupus but tests aren't coming back positive yet.

You know autoimmune diseases . . . they like to hide.

Lupus is dangerous. It can attack anywhere in the body. The heart, the lungs, the kidneys. Does your sister ever get rashes after being out in the sun? Does she feel worse after being in the sun? Does she get a rash on her cheeks (the ones on her face, not down there!!!).

A GP could run the tests but then what would they do? They aren't an expert. They could run them and refer her or just refer her and let the expert run the tests. There are tests that a GP probably would not run or know to run (i.e., C3).

http://www.lupus.org/webmodules/weba...364&z=0&page=4

I'm not a doctor, so I can only speculate. I would suspect some kind of autoimmune problem due to the fevers, the infections, etc. Only a doctor can figure all that out though.

I hope this helped.

Annie

Oops, one more thing. If she has lupus, she should be prepared to potentially have a "group" of doctors, since lupus likes to create havoc on so many different body systems.

[jana]

No, my sister hasn't had ANY lupus tests. So far, I can't convince her OR any of her doctors.

She sees a migraine specialist -- at the same clinic where I see my MG specialist. Her heart is ok as far as we know -- they checked it out pretty completely BEFORE starting her on all of the meds -- she is ALSO taking Maxalt (has tried all sorts of others -- arrrggghhh). She IS down from 28 days of headaches a month to 7 or 8 days -- a HUGE improvement, but we'd all like even more.

She hasn't seen a rheumatologist -- from what I understand, it would be easier to get a private audience with the President or the Pope. Rheumys are in VERY short supply in our neck of the woods OR very, very overbooked.

She doesn't LIKE to be outside, so not really sure about the sun. She DOES have a recurrent rash on her legs -- but it is itchy, red, and scaley -- usually in circular areas. I do remember her breaking out all over her face a couple of times (not butterfly pattern) -- and we didn't know why -- she has fantastic skin -- small pores.

At one point, she had a droopy eye and was slurring her speech -- I was convinced that she had MG. Of course, she had a very sophisticated MRI at the beginning of her migraine "journey", so MS was more or less ruled out. They ran the AChR panel -- negative. The neuro was convinced that these were simply migraine aura symptoms. I read that Lupus was the great "mimic" -- I wonder........

Annie, you have REALLY helped a LOT!! I'm going to print your message -- and print info from the links. My sister has almost stopped listening to ME "harp". I'm the "sick" one -- yet, SHE is the one we ALL worry about.

[Maxwell'sMom]

Welcome Jana So glad you're here!!!!
Love Lizzie

[jana]

Originally Posted by Maxwell'sMom

Welcome Jana So glad you're here!!!!
Love Lizzie

LIZZIE!!!! You are already here!!!!!! Isn't this place "da bomb"??

[Maxwell'sMom]

yes it is!! When it first started it was me, a lady named Lois, and for the life of me, I can't remember the other couple of people. I don't post as often as I read. Been trying to change that.
I'm so glad you're here!!
Love Lizzie

[jana]

Ya know, Lizzie, I've been sort of lurking since I joined in April -- then, all of the sudden, I started talking -- now I just can't seem to SHUT UP!! Bless these poor people's hearts -- they don't know what has "hit them" -- LOL. You're gonna have to tell em I'm harmless and have good intentions.

Love you too!!!

[AnnieB3]

Hi, Lizzie. Hope you're doing okay.

Jana, Lupus can kill. It's that simple. And it can do s-loads of damage to the body. It is an inflammatory disease. Pleurisy is caused by inflammation (though it can be caused by other things like infection).

You know how when you have an infection, you usually get a fever? This kind of inflammation can cause that low-grade infection. That does damage too.

I know that people like to stay in denial, often because they are scared. But lupus is a lot more scary untreated. I wish you luck in getting her help. She may not have lupus but something is going on that may end up getting her even sicker.

Annie

[jana]

Thanks, Annie. Maybe the baby in the family will FINALLY listen to her big sis. *sigh* Too much of "if you ignore it, maybe it will go away" going on with her -- used to be the same way with me. We were brought up to keep on going -- pull your weight -- you know, the Protestant work ethic? I had a FULL year of sick leave built up when MG finally knocked me down.

[redtail]

Hi Jana,

just had to pop in here and say "love your avatar!!!" are they yours??
Kate

[jana]

Hi Kate! They WERE mine until about a year and a half ago -- MG "got in the way" (BIG SIGH)-- I found them good homes. The donkey, Frances, now lives with my next-door-neighbor and keeps her Haflinger gelding company. I get to see her anytime I want AND hear her braying -- and that's PRETTY DARN GOOD!!!

Pretty Girl (the silver dapple Mini/Shetland cross in the photo) and Possum (a bay Exmoor?? mix) went to a home with 3 loving little girls.

I had given up BIG horses because of MG (losing my balance) -- but, didn't expect to have to give up the little ones, too. But, they have to be fed and tended EVERY single day -- you know how unpredictable ole MG can be. Other family members offered -- but, they already have enough to do -- and they are NOT as "nuts" about equines as I am.