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aridge
06-01-2008, 01:48 PM
Hello--Ironically I was on this site a few months ago b/c my sister had a positive ANA test so they suspected lupus. She has seen a rheumatologist and for now he has diagnosed her with a "nonspecific connective tissue autoimmune disease" and said a more conclusive diagnosis would come after many tests and office visits.

In the meantime, over the last couple weekends I took my kids to Disney (we live in Orlando)...and each day after being in the sun and walking all day I developed a terrible red rash on my legs from my sock line up to my knees. It was bright red and splotchy. Immediately b/c of my sister's bloodwork... I am thinking lupus. Each time the rash went away the next day, but yesterday it was much worse so I went to the ER so a doctor could see it before it went away. One of the first things he asked was if anyone in my family had lupus. Anyway, he ended up saying it was vasculitis, which can be cause by lupus or various other unknown causes. What scares me is that I have had pain in my knees for years now, and then my sister's positive ANA and now the rash. However, I had an ANA test a couple months ago and it was negative.

After research...I saw some pictures and read about something called "golfers vasculitis" that looked identical to what I have. However, it was not from any reputable websites. Has anyone heard of this "golfers vasculitis?" And from my symptoms...does it sound like it could be lupus or not?

I'd appreciate anyone's honest input.

Thank you and God Bless you all!

sits_inthe_corner
06-01-2008, 02:33 PM
Hi aridge

I'm not saying you have lupus, "but" you cant discount it either.

I'm a 48 yr old female. My mother had lupus as does my sister. I've had one positive and another boarderline and two negative ANA tests.

Like you I break out in a rash after spending even a small amount of thime in the sun. There are very many symptoms with lupus, not everyone gets all the symptoms.

It's better to know and deal with it, but it can take awhile (as you know with your sister) to actually get a diagnoses.

- Avoid direct sunlight, keep covered up, wear sunscrean 45 or higher, wear a hat.

- East healthy

- Get proper rest

- Keep moving, work your muscles and your joints, but listen to your body when it tells you you've gone to far.

I think you should see your family doctor and get the ball rolling, if you haven't already. It really is best to find out.

Have you had any other complaints?

I have arthritis in my feet, knees, neck, rib cage, elbo's...........

you get the picture.

- Manage your stress

aridge
06-02-2008, 07:53 AM
Thank you for your reply so quickly. I am sorry you are dealing with lupus, as well as your mother and sister. I sure hope they find a cure for this and all autoimmune diseases--my husband has Chron's and it is terrible. I am worried that my children will end up with an autoimmune disease, especially if I get diagnosed.

The only other symptoms I have are headaches and fatigue, but I often chalk this up to having a 22 month old and 8 month old at home. Also, after both of my babies (I had c-sections for both, but had healthy pregnancies); my liver enzymes were elevated (AST & ALT were double), but a couple months after my pregnancies these levels went back to normal and they could never figure out why they were elevated. And about 5 years ago I had hematuria (RBCs in urine) and they could never figure out why. And my knees hurt alot and now this rash. So I don't feel good about it, but we'll see.

I must say my rash does not appear to look like a lupus rash at all...it is definitely vasculitis...but from my reading it says lupus can cause vasculitis. But I also read that some people get vasculitis with no underlying cause. I go to the dr today at 3:30...I'll keep you posted.

Have a great day!

Amy

Oluwa
06-03-2008, 08:31 AM
Hello Aridge...

Welcome here...

A person should have four or more of these symptoms to suspect lupus. The symptoms do not all have to occur at the same time. They can be accumulative over years, that is why the limbo dance. They should treat the symptoms even without a diagnose.

A negative ANA merely means you are negative..not a diagnose to say you do not. Approximately 3 -5 % of people have a negative ANA and do have Lupus...just as to say a positive ANA doesn't mean Lupus....could be a myriad of diseases.

Lupus is a great mimicker of disease...so it maybe a spell for a definite diagnose...

Malar is the distinctive butterfly rash, but you can have rashes anywhere. I have a recurring rash on my stomach and hinder..

The Eleven Criteria Used for the Diagnosis of Lupus are..

Malar Rash ...Rash over the cheeks

Discoid Rash ....Red raised patches

Photosensitivity ....Reaction to sunlight, resulting in the development of or increase in skin rash

Oral Ulcers ...Ulcers in the nose or mouth, usually painless

Arthritis ...Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

Serositis ...Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

Renal Disorder ....Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

Neurologic Disorder ....Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

Hematologic Disorder.....Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

Antinuclear Antibody ....Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

Immunologic Disorder ....Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).


Info on vasculitis... http://www.mayoclinic.com/health/vasculitis/DS00513/DSECTION=1

Refer to page two for the types...

Vasulitis is common in people with Lupus...

Again welcome to a place in space where you will find experienced people in pain, limbo dance, love, laughter and all that good stuff..so search about. Chat up.

Keep looking for your wellness,
Oluwa

aridge
06-03-2008, 09:57 AM
Well I went to the doctor yesterday and ran all the tests (ANA, sed rate, etc.) Will have the results tomorrow. However,he did not suspect lupus b/c of my rash. He felt it was capitulitis (spelling probably wrong) and he said that if it was lupus he would expect to see a rash on my face and wouldn't think it would be my knees that hurt, but rather my small joints. He did not even give me the opportunity to discuss my other symptoms, such as the headaches and fatigue. He was actaully a little rude and just said the ER doctor was out of line for suggesting lupus. Considering my sister had a positive ANA test, constant joint pain and fatique...I don't think the ER doctor was out of line at all. VERY FRUSTRATING..which I can see I am not the only one that has been frustrated by doctors. Anyway, I hope he is right...I just wish he would have given me more time to discuss my symptoms. But I guess he just wants to get the blood work back and go from there.

Thanks for everyone's comments...I'll keep you posted on my progress as well as my sisters.

Amy

Oluwa
06-03-2008, 12:53 PM
Hey Amy...

It is toughy trying to find a doctor who we can have a rapport with it.

Sometimes I think doctors compete internally with one another, as my PP ask, why is your rheumBA treating me for...? I forgot what. Maybe it is their ego, money, greedy or just a pecking order of things in their wally world...

Rashes are common in IT, and not all people with IT have rashes nor do they have the malar rash..aka butterfly rash. A bit over 50% - 65% have the butterfly..you maybe the 35%-50% that doesn't. And maybe you don't have IT at all..

Crazy, eh...the main objective is to rule out any diseases and treat your symptoms. Are they treating your symptoms or just throwing possibilities out as they have a battle of the egos?

To determine exactly if your rash was IT they would have to do a biopsy, you don't want that. They do a punch out usually. I've had two punch outs but not to determine IT but other skin diseases...

I am not familiar with "capitulitis". This link will take you to name of skin diseaes, rashes and etc..maybe graphic to you... http://www.dermnet.com/menuCasePhotos.html

Knees, mine have hurt, and so have my wrists, fingers, toes, heels, ankles, hips, shoulder, neck, spine, jaw..are there any left..hummm. I think the only joints that never have hurt are the ones on my fingers closest to my nails except on one finger, the center on the left hand. I don't use it for obscene gestures.

Frustration is an emotion we all share...be patient, learn about all the diseases you may think it is. Knowledge is your key to heatlh...enables you to ask questions without feeling intimidated...

I hope they are treating your symptoms. Don't get discourage, it will reveal itself whatever it is. As they say, sometimes with IT it takes years for IT to reveal ITself to you..the limbo, the merry-go-around.

For GP...people with sensitivity to sunlight from any cause should wear protective clothes, avoid sunlight as much as possible, and use sunscreens..and if possible, any drugs or chemicals that could cause photosensitivity should be discontinued..but, consult with your doctor before discontinuing...

Info...may help...
http://dermnetnz.org/reactions/photosensitivity.html

Keep looking for your wellness..
Oluwa

Oluwa
06-03-2008, 01:01 PM
Wrong thread..now how did that happen? Humm. Maybe I hit the back button, drugs, IT...but anywho I erroneously put a post to another here...that is why the blank.

Well, it was a blank...till I type this.

D'oh
Oluwa

Saysusie
06-05-2008, 02:23 PM
U R 2 funny Oluwa :rainbowafro:

sits_inthe_corner
06-05-2008, 02:33 PM
Good luck Amy, let us know how your blood results look. Ask for a copy for you're own records.

Oluwa
06-05-2008, 06:21 PM
Aridge..

And how did the results come out yesterday....

Saysusie
http://www.freesmileys.org/smileys/dance004.gif (http://www.freesmileys.org)

aridge
06-06-2008, 06:38 AM
Well the results are back and all my blood work was normal (ANA-negative). However, I am still not convinced nothing is wrong. It just seems strange to be 32 years old and feel the way I do. I woke up last night and my hands were killing me. And to just get this awful rash on my legs...I feel like something had to cause that to happen. However, my dermatologist and primary doctor both said they did not suspect lupus and the blood work agreed with that. So for now, I will be thankful and concentrate my engergies on trying to get to the bottom of what is going on with my sister. Her joints are once again hurting her once again so her rheumy wants her to go back in for more blood work. I will keep everyone posted. Thank you so much for your kind support and I will keep all of you in my prayers.

Oluwa
06-06-2008, 12:55 PM
Amy..

A negative ANA merely means you are negative..not a diagnose to say you do not have IT. Approximately 3 -5 % of people have a negative ANA and do have Lupus...just as to say a positive ANA doesn't mean Lupus....could be a myriad of diseases.

Are you or the doctors trying to convince you there is nothing wrong? It is strange to be in pain..Well, pain isn't strange in itself. Pain is an indication there is something wrong. It is our body signaling us ..hey, you...something is wrong in here.

Remember IT is an accumulative disease...are they treating your symptoms, ruling out what it isn't and including what it maybe?

Keep looking for your wellness, early diagnose and proper self care is important for managing this disease.

Hugs,
Oluwa

sits_inthe_corner
06-06-2008, 02:39 PM
Amy

My knees are a mess as well. A few things that help me are wearing a tensor velcro wrap around knee brace when driving or doing house work or when ever my knees get intollerable. In other words I probably take it off for a bout an hour or two a day :lol: and when I go to bed.

I sleep in satin pajamas so I can turn over easy through the night and dont wake up in horrible pain from jarring my legs through the night. Do not be afraid to exersize. Course jogging is out. But walking, a stationary bike, tread mill as a slow pace and even level is fine, swimming is fantastic. Just listen to your body it will tell you when it's had enough.