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Posted 6/17/2008 5:19 AM (GMT 0)
hi everyone. i am 17 and have recently found out that i most likely have lupus. i have appointments with the rheumatologist and i haven't been officially diagnosed. my mother tells me they've ran blood tests and it is most likely. i have a family history of lupus, my aunt and great grandfather have it, so i believe it may be also. i don't know a lot about what lupus is, but i do show many symptoms. we originally thought these symptoms were an allergic reaction, but at an appointment with the allergist, he noticed a rash across my face which is characteristic of lupus. there are many others, at which i do not wish to go into nauseum about at the moment. most concerning though are swollen eyes throat and tongue, which i have been to the ER for three times in the past two weeks, and feel i may be going in for again in the next couple of hours. anyway, i would really just like to know where i could get more information about lupus and what it is and if what i am experiencing is normal for lupus. i was under the impression that lupus wasn't normally diagnosed until the 20s, so as could be expected being only 17, i am very uneasy about the possibility of the disease and severity which it could entail to me specifically and my future health. any information or explanation would be greatly appreciated
Posted 6/17/2008 11:37 AM (GMT 0)
TCorr...There are some people your age that was just diagnoise with lupus.It sounds like your mother is on top of things. As soon as you see your rhumy she will most likely know what to do. If she puts you on plaquinel it will take awhile before you start feeling better. You will find alot of info. on this forum. Keep us updated on your diagnoise's. Good Luck... Debbie
Posted 6/17/2008 2:48 PM (GMT 0)
Welcome to the forum! Check out the links to various information at the bottom of this post, I think you'll find out a lot. Feel free to post any specific questions here, and read away! Lupus is very unique to the individual, so your specific symptoms will not be matched, but we all have some similar basic situations to deal with. Cheers,
Posted 6/17/2008 4:27 PM (GMT 0)
Hi TCor Welcome to the forum. *sigh* I'm so sorry you are so young and having to deal with all of this medical stuff. I'm glad your mom is helping you get to the right docs to help get things figured out. A lot of people with Lupus also have allergic reactions to many things . . . so it is quite possibly a combination of problems causing your symptoms. The swelling in your throat and tongue is very scary and I hope you'll keep us posted on that. Do you carry and epi-pen so that you can self inject if you need to??? This can be an allergic reaction to any one of numerous things from food to bug bites. I'm sorry there is no way to give you a summary of lupus issues . . .its a huge topic and each of us are affected very differently. Some have only kidney issues (that's enough all by itself) . . . and some have many overlapping conditions and symptoms. Lupus can affect most any part of the body and so it can be difficult to figure out what symptoms are from the Lupus and what are from another issue or illness. But by and large, the rheumatologist will treat the symptoms. It can take a while to figure out meds and get everything adjusted and things can change from day to day . . . but you will get so you are very tuned into your body and your needs. It just takes time. You are smart to educate yourself. The more you know, the more you will be able to help your doctor and yourself. There are some very helpful and supportive folks here . . . so if you have any specific questions you don't see addressed in recent topics, ask away. "Lupus Resources" (link at the end of my signature) has some great info to start with and Lynwood gave you some good links too. There is a recent new member who's 6 year old daughter was recently diagnosed. There are also a few teen and young adult members here. Keep us posted!! Blessings!
Posted 6/17/2008 11:38 PM (GMT 0)
Hello TCorr212,
Welcome. I am so sorry that you have to deal with all this "fun" at such a young age.
I wanted to say that my symptoms had me going to an allergist for several years before lupus began to be suspected. I had the rash, but, even more alarming was the throat and tongue swelling.
I have now been diagnosed with lupus, and severe allergies. There are so many triggers that I just stick with the few foods I can eat and the few meds I can take. I also carry both an epi-pen as well as a bottle of epinephrine and empty syringes to self-inject, thus avoiding an anaphylatic reaction. I only use the epi-pen if there is not enough time to load a syringe and inject the epi. (I hate the pens). But, it took years of seeing the allergist and many trips to the ER to convince the good doctor that a little bit of epi from a syringe was much better than the pens.
My PCP, rheumy and allergist have all worked together over the last 5 years coming up with a plan of treatment. I guess the concensus is that, for whatever reason, my overactive immune system treats almost everything I come into contact with as an allergen. That, in turn, triggers a lupus flare.
Lupus seems to affect all of us differently.
I hope you get some answers, soon. I will keep you in my thoughts and prayers. Just remember that this whole diagnosis/treatment thing may take a while.
Once you get a handle on what exactly triggers your flares, you will learn lots of tricks to deal with and avoid these triggers.
Make sure you stay well rested (I know, you are 17, easier said than done).
Good Luck.
Posted 6/18/2008 1:23 PM (GMT 0)
Hi Tcorr. I don't have anything to add to the great information others have given you, I just wanted to add my welcome. I'm sorry you are having to deal with this at such a young age. Know that we are here for you. Take care and I'm glad you joined us.
Posted 6/18/2008 7:17 PM (GMT 0)
Hey Tcorr.. I just wanted to give you some of my support. I know it is not easy being so young. I am 15 and have been trying to get a diagnosis of Lupus for about two months, not that I want that. lol. But this site is really great and has helped me out alot. Just keep your head up and dont give up.
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