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luvpinkpeeps
06-01-2008, 11:34 AM
Hello everyone,

Here for some support as it is difficult for friends and family to understand.

I am not diagnosed as of yet because I have had two negative ana tests and the clinic I went to says that means I don't have Lupus.

Well, I have so many of the physical manifestations, just a negative ana.

My mother died of lung disease and kidney failure and her symptoms match that of a Lupus case.

I don't want to go undiagnosed but fear that since I do not have medical insurance there is little that anyone will do as far as testing, etc.

thanks for the ear, :)

pinkpeep

sits_inthe_corner
06-01-2008, 12:09 PM
Welcome luvpinkpeeps

I am not diagnosed either, I've had one positive ANA test and one boarderline and two negative.

Even with a positive ANA test you are not diagnosed. On the other hand one negative ANA test does NOT mean you do not have lupus, shame on them for telling you that. There are many factors that go into making a diagnoses.

Plus there seems to be (at least in my case) a real resistance to running tests to find out.

My mother had lupus, my sister has it and I am showing symptoms.

The people on this board are very warm caring and allow me to hang out with them and ask questions and whine :) and vent.

I'm sure the others well be along soon to welcome you.

Start a journal, list all of you symptoms, ie. rashes aches pains lumps everything you have been dealing with.

When you are not feeling well make sure your doctor knows about it.

You can't be quiet with lupus, you have to SQUEAK loud :)

In the mean time take good care of youself.

- Eat healthy
-Get proper rest
-stay out of direct sun and or cover up
-Learn to deal affectively with your stresses
-Work your body, your joints and your muscles, but dont over do

These are all very important things to manage when you have lupus. And even if it turns out you dont have lupus you are still taking good care of yourself.

Take a look around the sight, read other's posts, ask questions :) and again, welcome.

Saysusie
06-02-2008, 08:57 PM
Hi lovepinkeeps;
Sits-in-the-corner has given you excellent advise and I cannot add much to what she has said. So, I just wanted to welcome you to our family and to let you know that the people here are very caring people who are always willing to provide you with information, answers, comfort, support and understanding!
Again....welcome!

Peace and Blessings
Saysusie

rob
06-03-2008, 03:57 AM
Hello lovepinkeeps,

Sits in the corner is right, the ANA test is only one of the factors involved in a diagnosis of Lupus. A negative ANA does not rule out Lupus, not by a long shot. I hope very much that you don't have Lupus, but like so many of us, you want an answer. You want to know the cause of all the strange, and sometimes frightening symptoms you are having. There is no "typical" Lupus patient. The symptoms vary from person to person. Take me for example. One of the more common symptoms is the telltale butterfly rash on the face. But in the almost five years since my diagnosis of SLE, I've never once had any rash on my face. There are unfortunately too many health care professionals who have absolutely no clue about the nature of the disease. Persistence, and educating yourself is the best thing you can do for yourself. Don't be afraid to get second, even third opinions. Be an advocate for yourself. I hope you can find an answer. There is a ton of good, accurate info on this website, and people who care, and understand. Welcome.

Rob

cheryl_v
06-04-2008, 08:23 AM
Just wanted to say welcome aboard, you've found a good place. The others have already said it all, so just saying hi. I'm in sunny florida too, central florida.

Laticia
06-04-2008, 08:49 AM
to luvpinkpeeps:
Who diagnosed this? A Rhumatologist had diagnosed me with Connective Tissue Disorder-which develops into Systemic Lupus.
I understand that it is very frustrating to have symptoms of an unknown disorder, but...
IF IT WALKS LIKE A DUCK AND LOOKS LIKE DUCK....

mnjodette
06-04-2008, 03:27 PM
Hi, luvpinkeeps - glad you found us. Don't feel alone - many here are not officially diagnosed, but suffer lots of the symptoms of lupus. Diagnosis is so difficult sometimes - lupus is a mysterious illness that can look like lots of other illnesses. Some docs are really reluctant to put a label on it, but many docs are just not very well informed about lupus. (For example, saying that a negative ANA means no lupus....not true...nor does a positive ANA mean you DO have lupus.)

I think you'll find lots of good information here, and I KNOW you'll get lots of support. Good folks here!

Jody

luvpinkpeeps
06-04-2008, 07:05 PM
Thank you all for responding! I feel validated when I come and read these boards.

The General Doc at a clinic is the one who gave me that flimsy info about the ANA test. :?

You are right, it is a disease that we have to bear the load on and continue our quest for answers. I just wish that Doc would become more informed! :x

I was told also that the rash on my face was probably Rosacea...isn't it possible to have both rashes?
:oops:

I spent a short time outdoors with my girls in the pool a week ago, I think 30 minutes tops...I will now wait until the shade covers the pool.

I had the strangest feeling in my chest (like the beginning of a chest cold) but that has disappeared now.

OH at that same visit that the Doc said a negative ANA was proof of no Lupus....He did diagnose me with Pleurisy....and gave me CLARITIN for that!


:shock:

Jennyfoo
06-05-2008, 12:33 AM
Claritin for Pleurisy? Caritin is an allergy med. Pleurisy is inflammation of the lining around the lungs. Claritin will do nothing for it. Anti-inflammatories are what you need.

I'm also undagnosed- going to Rheumatologist next week and I do have a pos ANA and high SED Rate plus MANY of the symptoms including sun sensitivity and the rash on my face. I've had pleurisy 4 times- 2 times I was diagnosed by a Dr, the other 2 times, I felt it coming on and started mega-dosing on Ibuprofin. It does the trick. It's always been after/during a chest cold or bronchitis. BTW, Pleurisy IS an indicator of Lupus.

If I were you, first, I'd find another Dr. who actually knows something about being a Doctor :lol: and second, I'd take 800 mg(4 pills) Ibuprofin 3X/day to get rid of the inflmmation around your lungs.

sits_inthe_corner
06-05-2008, 02:14 PM
Hey luvpinkpeeps

I have Rosacea and so do a few others here...so yes it is possible. Do you have a perscribed cream for it? If not go to your doctor and get some. This can be extreamly painful if left untreated.

Hugs

luvpinkpeeps
06-06-2008, 05:30 PM
no cream for it...I haven't had any pain with the rash- only a tingle now and then...I am not positive it is rosacea.

I have been so terribly tired today, ugh...must be that it is summer now and very hot and humid.

Anyone have a flare because of the heat alone?

just a walk across the parking lot will do me in. :roll:

sits_inthe_corner
06-07-2008, 03:51 AM
I had to convince my doctor to let me try a rosacea cream, because she thought that only alcoholics got rosacea :shock:

I was quite offened and told her so. She gave me the cream to try and it worked. Nothing ventured nothing gained.

You need to get it looked at soon. If it is rosacea and left too long you will be misserable and in terrible pain. It can just sort of sit there for a while and not be too bothersome ... then WHAM! You'll be misserable for about two weeks while you try to get it under control.