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View Full Version : Just diagnosed about a month ago - and i want to know more?!



YouKNOWit!
10-13-2011, 05:16 PM
Hey everyone :)

I am 19 and was just diagnosed with lupus about a month ago..
before i was diagnosed i had never even heard of Lupus so i had no idea what so ever what it was.
After looking at alot of websites about Lupus i am now starting to have a better idea of what it is!

I had been going to the doctors for years complaining that my bones were aching and all i ever got told was that it was "growing pains" by multiple dr's,
i also have different skin tone on both of my arms, i got that about 7 years ago they told me it was dermititis!
Anyway in August my mum demanded they take a blood test. While waiting for the results i went overseas for a holiday and when i got back my mum said the doctors had called and said i needed to go in (They never call) So we assumed i had athiritis. He told me it came back positive for Lupus and didnt explain anything at all?!
I dont know yet what form of Lupus i have (which is kinda scarey).
I am still waiting to see a Rheumatologist.

Can anyone please help?!
What can i expect when i go to the Rheumatologists?
How long did you wait to see one?
Anything extra you think i should know?

Thanks ALOT! :)

ritzbit
10-13-2011, 06:40 PM
I am going to come back to your thread later an try to answer your questions better when I can think straight and feel better. I just wanted to say welcome to WHL! There will be plenly of people on here to come by and help you out. This is the best group of people. I am 19 also, I heard growing pains before too. I had to wait a few months to see my rheum the first time, and now I go every couple months. There are "stickies" at the top of the forums that have a lot of useful info in them.

Gizmo
10-13-2011, 08:41 PM
If my understanding is correct, there are only 2 forms of lupus: discoid, which is primarily limited to skin rashes; and systemic, which can affect just about any organ in the body. Systemic (SLE) is what most of the people on this site have and it can also cause rashes (usually on the face and areas that are exposed to the sun), fevers, mouth sores, joint pain and a whole bunch of other stuff.

There actually isn't a "blood test for lupus." There are several blood tests where a positive result makes lupus more likely, but your rheumatologist shouldn't make a diagnosis based on labs alone. There are many autoimmune disorders that can cause a positive ANA, increased SED rate, elevated CRP, etc... Many of those autoimmune disorders also cause joint pain. It's important that the rheumatologist consider all the possibilities because the treatments can be different, and the complications that they need to watch for are also different for each one.

No matter what you end up diagnosed with, you are welcome here and I hope you will keep us up to date on what is happening. Please read the "stickies" as Ritz suggested. You might want to start keeping a journal of your symptoms and trying to figure out what makes your rashes better or worse (like sun exposure). That will help the rheumy figure out what is going on.

steve.b
10-13-2011, 09:15 PM
hi youknowit,
welcome to our cyber family.

there are people here from all over the world, so you are not alone.
recently i have noticed quite a few people in your age group, so you are not alone.

please read a few of the threads.
they are full of our personal experiences.

also when you want to know a little about someone, read there profile.
this is a section where we can write what we want people to know about us.

again welcome.

tgal
10-14-2011, 09:37 AM
If my understanding is correct, there are only 2 forms of lupus: discoid, which is primarily limited to skin rashes; and systemic, which can affect just about any organ in the body. Systemic (SLE) is what most of the people on this site have and it can also cause rashes (usually on the face and areas that are exposed to the sun), fevers, mouth sores, joint pain and a whole bunch of other stuff.

There actually isn't a "blood test for lupus." There are several blood tests where a positive result makes lupus more likely, but your rheumatologist shouldn't make a diagnosis based on labs alone. There are many autoimmune disorders that can cause a positive ANA, increased SED rate, elevated CRP, etc... Many of those autoimmune disorders also cause joint pain. It's important that the rheumatologist consider all the possibilities because the treatments can be different, and the complications that they need to watch for are also different for each one.

No matter what you end up diagnosed with, you are welcome here and I hope you will keep us up to date on what is happening. Please read the "stickies" as Ritz suggested. You might want to start keeping a journal of your symptoms and trying to figure out what makes your rashes better or worse (like sun exposure). That will help the rheumy figure out what is going on.

Great info here however there are actually 3 types of Lupus. Discoid (skin only), SLE and SCLE. The information about SCLE can be found here (http://emedicine.medscape.com/article/1065657-overview) (and the following pages)

SCLE is often thought of as the "bridge" between Discoid and SLE. Although it is often thought of as a type of skin rash people with SCLE lupus often fulfill more than 4 of the criteria for an SLE diagnoses. Some doctors describe SCLE at its worst as "SLE without organ damage". SCLE is a fairly recent addition to the Lupus family

Tonyarenee
10-14-2011, 09:59 AM
Forms of Lupus
Systemic Lupus Erythematosus

Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are:

inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood and can be so damaging that dialysis or kidney transplant may be needed
an increase in blood pressure in the lungs (pulmonary hypertension)
inflammation of the nervous system and brain, which can cause memory problems, confusion, headaches, and strokes
inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes,
hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack
More information about how lupus affects various organs and tissues is available in the LFA fact sheet series, "The Body & Lupus."

Cutaneous Lupus Erythematosus

Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.

Drug-induced Lupus Erythematosus

Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected.

The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.

Neonatal Lupus

Neonatal lupus is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth. Most infants of mothers with lupus are entirely healthy.

kim,l
10-14-2011, 03:12 PM
hello again glad you found where to write message i have systematic lupus my mother had it and recently found out that my 23 year old has lupus my advice would be to write everything down all symptoms you have had and all the questions you would like to ask rheumi when you go in so you have as much information as you need to understand goodluck and welcome whl we are here to talk anytime hugs

tgal
10-14-2011, 09:31 PM
Forms of Lupus
Systemic Lupus Erythematosus

Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are:

inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood and can be so damaging that dialysis or kidney transplant may be needed
an increase in blood pressure in the lungs (pulmonary hypertension)
inflammation of the nervous system and brain, which can cause memory problems, confusion, headaches, and strokes
inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes,
hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack
More information about how lupus affects various organs and tissues is available in the LFA fact sheet series, "The Body & Lupus."

Cutaneous Lupus Erythematosus

Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.

Drug-induced Lupus Erythematosus

Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected.

The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.

Neonatal Lupus

Neonatal lupus is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth. Most infants of mothers with lupus are entirely healthy.

Thanks! I always forget drug induced and neonatal because not many babies typing! LOL Great catch

YouKNOWit!
10-14-2011, 10:16 PM
Thanks everyone for all ur help :) My friends and family dont realise how much pain i really am in just because i look fine on the outside. So its great to talk to some people who understand what i am going through! Im already so over being sick and tired..does it get easier? Thanks again everyone, and i will definetly keep you updated :) xx

YouKNOWit!
10-14-2011, 10:18 PM
Thanks Kim...yeah found out it was just my browser blocking me from clicking the box that you write in haha..i will definetly start taking notes! Thanks for your advice xx

trustme
11-24-2011, 07:51 PM
thats the same thing that happened to me. about 2 days ago on my way out the doctor says oh btw...u have lupus we will talk about it the next time you come here.

YouKNOWit!
11-25-2011, 07:09 AM
thats the same thing that happened to me. about 2 days ago on my way out the doctor says oh btw...u have lupus we will talk about it the next time you come here.

Really? its ridiculous huh?! Anyway just letting everyone know i got in to see a specialist early and turns out i was misdiagnosed, i have Lupus's "Cousin" Disconnective tissue disorder..which is like Lupus just not as bad, but i am glad i was misdiagnosed because before this, i hadnt even heard of Lupus, so now i am aware!

@Trustme - The specialist said my doctor probably didnt explain it because he didnt know much about it, and didnt want to give me faulse info?! :/

rob
11-25-2011, 07:36 AM
Really? its ridiculous huh?! Anyway just letting everyone know i got in to see a specialist early and turns out i was misdiagnosed, i have Lupus's "Cousin" Disconnective tissue disorder..which is like Lupus just not as bad, but i am glad i was misdiagnosed because before this, i hadnt even heard of Lupus, so now i am aware!


YouKNOWit!,

It is absolutely ridiculous. It would seem that the ignorance of healthcare "professionals" towards autoimmune disorders such as Lupus, is a worldwide problem. In Australia, the U.S., the U.K., Canada, South Africa, Jamaica, and all the other countries I did not mention from where our members here hail, the story is the same. Too many of the specialists who should know everything about Lupus, know very little.

Lupus needs to become a household name, a recognizable term that is understood by as many people as possible. With awareness, comes better care, more effective and affordable meds, and more money for research.

I'm very happy to hear you do not have Lupus. Just an FYI for you, having Lupus is not, and never will be a requirement to be a member here. We have many people who sign up and then find they do not have Lupus. Many of those people chose to stay, and have become good friends who have contributed to this website in many positive ways. Lupus or not, please know that you are welcome here!

Rob

YouKNOWit!
11-25-2011, 07:41 AM
YouKNOWit!,

It is absolutely ridiculous. It would seem that the ignorance of healthcare "professionals" towards autoimmune disorders such as Lupus, is a worldwide problem. In Australia, the U.S., the U.K., Canada, South Africa, Jamaica, and all the other countries I did not mention from where our members here hail, the story is the same. Too many of the specialists who should know everything about Lupus, know very little.

Lupus needs to become a household name, a recognizable term that is understood by as many people as possible. With awareness, comes better care, more effective and affordable meds, and more money for research.

I'm very happy to hear you do not have Lupus. Just an FYI for you, having Lupus is not, and never will be a requirement to be a member here. We have many people who sign up and then find they do not have Lupus. Many of those people chose to stay, and have become good friends who have contributed to this website in many positive ways. Lupus or not, please know that you are welcome here!

Rob

Aww thanks i appreciate it, in that case ill definetly be sticking around :)

rob
11-25-2011, 07:51 AM
thats the same thing that happened to me. about 2 days ago on my way out the doctor says oh btw...u have lupus we will talk about it the next time you come here.

Hi trustme,

Welcome to WHL. I know you were just diagnosed with Lupus. I'm sorry it had to happen to you in such a haphazard, uncaring way. It should not have happened to you this way. The way this Doctor handled things, and informed you, was beyond unprofessional in my opinion.

I know that right now, you are confused, a little scared, and maybe pretty angry (with good reason). Just know for now, that Lupus is not a death sentence, and a person can still live a productive, and fulfilling life despite it. I have been living with Systemic Lupus successfully for 8 years now, and my mother, who is now 75, has lived with it for more than two decades. She's still going strong.

Things will not be easy at first, but that will change, as you learn to live with, and accept the changes Lupus imposes upon us. Have hope, things will be OK.

Welcome to our group,

Rob

magistramarla
11-25-2011, 09:58 PM
Hi Youknowit,
Welcome to WHL. Many of us deal with the frustration of people just not understanding - "But you don't look sick!" Someone has even named their blog that.
There is also a site called "The spoon theory" that many people find very helpful.
I'm glad that you found our cyber family.
Hugs,
Marla

Gizmo
11-26-2011, 08:27 PM
Youknowit, could the doctor have said that you have "undifferentiated connective tissue disorder?" My daughter was diagnosed with that about 5 years ago (when she was 15), but is actually being treated with the same combination of drugs that I am (I have systemic lupus). We have a lot of the same symptoms. I think the hard part about her having that diagnosis is that doctors don't really understand what it is, and don't take it that seriously. Some don't even seem to know that it is an autoimmune disorder.

I hope you stick around and that you find the right team of doctors to help get things under control. BTW, people around here sometimes get diagnosed with lupus, then undiagnosed, and then re-diagnosed again. It's not that they had lupus, and then it went away and came back again - it's that doctor's are human and have different opinions and knowledge levels. Lupus is probably something that should always kind of be in the back of your mind when some new problem pops up.

trustme
11-26-2011, 08:59 PM
hi youknowit! oh i think you are right my therapist said most doctors only know enough to send you to a specialist. so i should find out in dec. more about it. but still are you educated on your new diagnosis? i would like to know more about that just in case i have it. please send me a pm if u aren't comfortable talking about it. thanks. nice meeting you also.