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iheartdisney
08-11-2011, 11:35 PM
Hello everyone!

I'm 27 years old. I have not been diagnosed with lupus, though I was tested about 5 years back. Even then, I had a lot of the symptoms. Since then, my now 22 year old sister has been diagnosed, and my mom was diagnosed back in '97, when she was 37 years old, after many long years trying to figure out what was going on. They said that she had probably had lupus for years, maybe even when she had me back in '84, and almost for sure when she had my sister in '89.

Some of my symptoms include-
malar rash (I know I've had this since at least '96, when I was about 12 years old)
photosensitivity (rash on my upper chest when shopping or under fluorescent lights)
muscle pain (especially in my lower legs)
lower back pain (not sure if it's lupus, but I can't even walk around barefoot in my house- I always wear Crocs)
chronic hives (lasted over a year- the doctors never could figure this out.)
chronic headaches (every day for over a year- I went thru everything trying to help. Still get them often)
neck pain
loss of peripheral vision (found out back in '05)
shoulder pain, on right side while driving
depression
fatique
body pain when I wake up in the morning

Everyone always thinks I'm sunburned, because my checks stay so red. No matter what I do, including a hat and sunscreen, my face always gets red. I can trace this back to beach trips as far back at middle school. Whenever I'm hot, or the every-once-in-a-while wine cooler, and it's like my face is burning!

I also keep cold hands and feet- they are like ice! It's 74 in here, and my body is comfy, but my hands and feet are always cold. Sometimes, like now, one hand feels colder than the other one, and even to the touch, that one hand is colder. But they stay normal colored.

Also, my eyes are very sensitive to light. I ALWAYS have my Oakleys on, and I have to wear polarized. It doesn't matter if it's cloudy or rainy, I have my sunglasses on. And in the bright sun, even my sunglasses aren't enough- I have to have a hat to keep the glare from coming in the top of my glasses! I didn't even think about this being Lupus related until I read about this on a thread tonight!

I also seem to lose a lot of hair, but I'm not sure what's considered normal or not. But the whole time I'm taking a bath, I'm pulling hair out of the water (sorry, I know that's gross!) and by the end there seems to be a lot of it.

Even back in 1997, when I was in 7th grade, my ankles started swelling while I was on a church trip. At first they thought it was because I had been walking around Six Flags in flat bottomed Keds, but even after I got back, they stayed swollen. Eventually it went away, and as far as I know, they never figured anything out. And it's not like I can ask my mom now- she doesn't remember ANYTHING (thanks, Lupus memory loss!).

And I have NO idea if this is lupus related or not, but when I was in high school my senior year, I went to the tanning bed a lot. (I know, it's awful). A few years ago, my parents bought one for the house. I tried getting in it a few times. Every time I did, and only being inside for 5-10 minutes, it felt like millions of ants were biting/stinging me on my back. It didn't leave a rash, but it did it every time. So after about 3 or 4 times of this, I gave up. It was miserable. I have never heard of this happening to anyone else, but maybe y'all have?



I am pretty sure my ANA level was 1:160 when it was tested a few years ago. And I had most of these symptoms back then. But I didn't get a diagnois, and I didn't go back.

This past fall, I was diagnoised with Polycystic Ovarian Syndrome. This spring, my doctor ran blood tests on me. For some reason, he tested for Lupus anticogulant. And I have it/am postive for it. (Still not sure how to put that.)

I'm not trying to be a hypercondriac, but it seems possible that I have Lupus. And the worst part is my mom. She told me that I don't want to be diagnosed with Lupus, because then it's so hard to get health insurance! So what- if I have it, I just stay undiagnosed and go without the medicine that may help me? Ugh! It's just frustrating!

So I had decided to wait on going back to the doctor to talk about Lupus, but the doctor I am seeing for my Polycystic Ovarian Syndrome said that I should really consider getting a LapBand, because without losing weight (BMI of 35) he doesn't think I can get pregnant. So when his nurse came in to talk to me about the LapBand, she mentioned that it's not a good idea for patients with this and that, and then she said "Lupus". That's when my husband spoke up and told her about my mom and sister, and that they thought I had Lupus a few years ago. She told us that I would need to find out about the Lupus before I could consider the LapBand.

So- now what?

If I could get some feedback, and maybe some comments on my symptoms, I would greatly appreciate it!!!

lovedbyHim
08-12-2011, 02:48 AM
Hi and welcome to our family who truly hears you. I am not a doctor but you know that saying, "if it looks like a duck and walks like a duck and quacks like a duck, its probably a duck." You even have doctors telling you the bloodwork so far and your history of symptoms thus far indicate lupus. I can't imagine having all that you have and not being treated for it. It's risky business. In PA most insurance co. will take me but I would have to pay out of pocket for one year any doc visits related to lupus. You have to do what works for you but lupus can attack some organs silently. It hit my thyroid and kidneys and I had no pain in them. Bless you dear as you wait to diagnosed and treated.

steve.b
08-12-2011, 05:16 AM
hi and welcome.
i have written a little of my story in my profile. please read it.
i had similar symptoms to you.
i went undiagnosed for over 30 years. when i was diagnosed, i had 4 major organs involved.
i am lucky that the medication has had an almost perfect effect on me.
i do not have any further organ involvement at present. but i know it is the medication that is keeping me safe.

i live in australia, so i cannot comment on health insurance. but medication is usually the best option for lupus sufferers.

Elo
08-12-2011, 11:49 AM
Hi there (: Welcome to the forum! I haven't been sick for very long, and I haven't actually been diagnosed, besides being told I have an autoimmune disease (but which one???), so I'm also in your shoes in thinking that I might have Lupus. It is pretty important to get diagnosed, so I would suggest looking into seeing a rheumatologist, if you haven't already. Living with all those symptoms and not knowing what's wrong with you can be tough. I just hope that you find something out soon and start to feel better, or find something that works for you.
Best of luck!!

tgal
08-12-2011, 08:11 PM
Hi there and welcome to WHL! While I am not a doctor and I can't give medical advice I can completely understand why you are thinking as you are. With the family history that you have and the symptoms you have it makes perfect sense.

I am speaking as one of those people without insurance and I will tell you it is SOOO hard. I will also tell you that the thing I regret the most is not MAKING doctors listen and diagnose me. Had I had a diagnoses sooner then I would have been on the right meds and possibly would have gotten this disease under control faster. Without that diagnosis my body was attached for longer then it needed to be. There really is no right or wrong answer but we will be here for you while you try to figure it all out!

Gizmo
08-12-2011, 08:37 PM
Welcome! Of all the things in your history, I guess the one I personally would be most concerned about the positive lupus anticoagulant. Here is some information from the Lupus Foundation website http://www.lupus.org/webmodules/webarticlesnet/templates/new_about.aspx?articleid=82&zoneid=2

If your doctor is considering surgery, especially lap band, you want to have all the information about your health ahead of time. Knowing if you are at increased risk for blood clots is a biggie, but also infection and inflammation. All of those things are also really important if your ultimate goal is to get pregnant. Getting on the right combination of meds could be life changing for you, and maybe make it easier to be active and lose the weight you want to take off.

In terms of insurance, my uneducated guess is that there are already enough red flags in your medical records that if an insurance company asked for copies, you would be considered high risk. As long as you are able to stay employed and always carry insurance coverage, you can't be denied insurance when you change carriers. Even one day without insurance can give the next insurance company an "out" to not cover a pre-existing condition. At least that is my understanding of the current laws, but I'm no expert.

magistramarla
08-12-2011, 09:45 PM
Hi there and welcome to WHL.
Are your Mom and sister seeing the same rheumy? Is there any way for you to see that doctor, too? It would make sense for that doc to be able to fit all of the puzzle pieces together.

My daughter has POS. She wasn't having any luck losing weight until a bright doc tested her for celiac disease, which she was told is very common in POS patients. She was an extremely allergic baby, so I wasn't surprised when they told her that she is both gluten and lactose intolerant. Once she was being treated for those, the weight just fell off.
Now that she is otherwise healthy, they are getting ready to try IVF

There are several threads here in which we have discussed how much AI diseases tend to run in our families. I have four daughters. One is disgustingly healthy, as is my only son. One has POS. Another one has IBS, asthma and allergies. The youngest one has mild asthma, allergies and recurring endometriosis.
Your family fits right in with this.
Keep asking questions and good luck.
Hugs,
Marla