could i have lupus?
hi everyone. i'm very new here.
here's my story. i'm a 19 year old college student & i think i may have lupus. my mother who is 42 has lupus. she's had it for as long as i've been born. throughout the years, i've seen here happy, sad, etc..all due to her lupus. she takes multiple meds in the morning. i've seen here jumping around like a 5 year old, and some days it hurts to get out of bed. not only does my mom have lupus, but my 2 aunts also have. (my mom's sister & my dad's sister.)
last summer (09), i discovered a growth on the top of my scalp. i went to a derm. who later performed surgery to remove it. turns out that it wasn't cancerous, it was just a wart. then off to college for the fall semester, i went. i felt fatigued all the time, and if i wasn't studying/eating, i was sleeping. i'd never felt this way before!! as a college student, i just determined that it was stress from school and my other extracurricular activities. towards the end of october, i noticed that a rash had developed on my left eyelid. i just thought it was a little rash & that it would go away. well, it didn't. feeling tired as ever, i continued on throughout the semester, miserable. also from my extracurricular activities, i began to lose weight...which was kinda weird because i exercised, but it wasn't extreme. "why am i losing weight like this?" maybe my appetite was changing, after all, i did become nauseous most of the night. that was extremely weird also, because it seemed like every night i would be nauseous for no reason at all!! nausea is not a game. home for christmas break, i'd sit downstairs on the couch, and my knees hurt bad. not only did my knees hurt, but my shoulders as well. "i'm not old, why are my knees bothering me so much?, i thought." it began to get a little cold outside, and my skin on my face, only my face, became dry. with my mother sitting across from me at the kitchen table, she asked,"what's that on your face?" i sorta brushed it off "as just dry skin". then she looked me deadd in my eye, and said, "i think you have lupus.. i really do." instantly, i became worried. when someone who has had lupus for 20+ years, says that...you don't take it lightly. i have a doctors appt. on the 29th of january.
please tell me what you think? do you think i have lupus?
any comment is greatly appreciated.
First, let me welcome you here to our family.
Now, to address your question: Lupus is a very difficult disease to diagnose. There is no single test for lupus and because lupus affects different people in different ways, it is even harder to diagnose. It's symptoms can mimic those of so many other auto-immune disorders (the fatigue, joint pain, the rashes). Auto-immune disorders are similar in that they all have a malfunction of the immune system, one in which the immune system cannot distinguish between the body's own cells and tissues and that of foreign matter, like viruses. Rather than simply producing antibodies to attack antigens (viruses, bacteria and similar foreign matter), the immune system creates auto-antibodies that attack the immune system itself. When this happens, we can suffer from inflammation (the primary feature of lupus), pain, and tissue damage. Inflammation, in and of itself, can cause pain, heat, redness, swelling and loss of function, either internally (certain organs) or externally (primarily the skin) or both. Lupus can affect every part of our bodies
Therefore, it is almost impossible for us to say that you may or may not have Lupus. What we can say is that it sounds as if you may be suffering from an auto-immune disorder, but we cannot say that it is or is not Lupus.
There are eleven (11) criteria used to diagnose Lupus. You must meet at least four (4) of the eleven criteria to be diagnosed with Lupus. Those criteria are:
1) Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2) Discoid rash – a rash that appears as red, raised, disk-shaped patches
3) Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4) Oral ulcers – sores appearing in the mouth
5) Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6) Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7) Kidney disorder – persistent protein or cellular casts in the urine
8) Neurological disorder – seizures or psychosis
9) Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10)Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11)Abnormal antinuclear antibody (ANA)
It is believed that Lupus can be genetic (not heriditary) and that if other family members have Lupus or other auto-immune disorders, you may be pre-disposed to developing an auto-immune disease, such as Lupus. Based upon all of this, it might be beneficial for you to talk to you doctor about your predisposition and your symptoms so that the appropriate tests can be run to determine which, if any, auto immune disorder you may have.
Please know that we are here to help you as much as we can. There will always be someone here to answer your question and/or to give you information. Please let us know what you and your doctors decide.
Peace and Blessings
Wow Saysusie what an amazing response!
Unspeakable joy i can relate to alot of your symptoms. Although i have not been given a formal diagnosis of lupus, my Rheum has recognized that my symptoms are autoimmune, exactly the way saysusie has explained. Therefore at this stage although my rheumy suspects lupus she has diagnosed Undifferentiated Connective Tissue Disease qualifying me for treatment.
Best of luck in finding a doctor who will be able to help get to the bottom of what is causing your symptoms. Hopefully you will find a doctor understanding enough to treat the symptoms while searching for answers. My biggest battle was getting treatment due to lack of diagnosis. It was a long journey that has finally seen me get the correct treatment. Look forward to hearing how you go.
welcome to our family, Saysusie has already demonstrated the advantages of this group. You will always find someone here who is ready to listen and offer any advice. We have several members who are college aged, and it is so sad to see them face this disease at such an early age. My heart goes out to you.
I just want to welcome you, and assure you that we will be here if you need us.
I am in the same boat as you and puzzled. I was diagnosed when I was 3 even though I had most of the symptoms but a negative ANA. Unfortunatly, now I can't even get the previous study information because it's been destroyed since I stopped going to that specific hospital and will most likely have to go through all the testing again. My doctor has also said that it is some type of connective-tissue problem (no kidding), and I am so far unlucky to see no treatment of any kind. I'm also in college, so I know how hard it can be to get through the day. Saysuzie is very knowledgable, so I look forward to reading her answers. She seems to find all of the information that I can't. Good luck on getting more answers, and I hope that you can get whatever treatment that you need.
thank you everyone, for all the kind words.
um, my doctors office called tuesday morning, and sadly,
i have lupus. most of what my nurse said that morning is now
kind of a blur. but, my next appt is coming up soon, and my
mother will be joining me. my doctor is also referring me to
a rheum. as of now, the only medication i am taking is vitamin
Hi unspeakable and welcome.
I am so sorry to hear you have lupus. One positive is that you have your Mom whom has a lot of experience with it. No one in my family has it so therefore no one really understands it. I think when you have someone who understands; it's a little easier. Keep your chin up and make a list of questions for the rhuemy. Keep us posted. If you have any questions, don't hesitate to ask. Usually, someone has an answer and it does help to have someone who understands. A couple of suggestions is to check out uv clothing on coolibar or the Sun collection on lands end and where 50 sunscreen when you are outside or under flourescent lights. Some of us react to sun; many of us also react to flourescent lights. A good book is Lupus for patients and families by Daniel Wallace. The book can be found on amazon or in your local library system.