maybe i am overexaggerating

Hi Daymay and welcome. I really doubt you are exaggerating and your doctor really shouldn't be blowing you off, especially with the family history you have. Just because your tests came back negative when you were 14 doesn't mean they will be negative now. I'm wondering if your doctor would give you a referral to a rheumatologist so you could get the testing done that you need to have done. ALso it sounds like you might need a new primary care doc who won't brush you off and who will take your questions and concerns seriously. Feel free to ask any questions you have. A lot of us have been through some of the same things you are going through with a doc who won't listen. Hang in there and don't give up. Take care and I'm glad you joined us.

Welcome Daymay,

Sorry you are feeling so poorly. Especially as young as you are.

Hippi is absolutely right. Get a referral to a rheumatologist and find a primary care doc who actually takes you seriously. Find a supportive family member (someone who takes your pain seriously) and bring them with you to the doc appointment. There are also some suggestions to new members in one of the posts in "Lupus Resources" . . . you can click the link at the end of my signature.

Glad you found us.

Blessings!

Dana, I'm sorry you're having these problems at your age. It sounds as though you are having to battle your health issues alone, but not anymore. We're here for you whenever you need us. I'm glad you've joined our forum and want you to know that we're here for each other.

I agree that finding a rheumatologist in your college town is a good idea. Most of us changed rheumy's several times before we found one who diagnosed us. Autoimmune diseases are very hard to diagnose and most doctors are reluctant to give someone a diagnosis unless and until they are positive that they know what it is. But a good doctor will treat you and give you medications that can help even if you don't yet have a diagnosis.

As far as mood swings, I had them at your age and they were awful. That was another lifetime ago and I didn't know that there was anything that could help them. I suggest you also find a primary care doctor or a gynocologist who can help you with your mood swings. Are they related to your period? Mine were definitely pms and I hated them. I hope you'll find a doctor who can give you some relief.

Please let us know how you're doing.

((((hugs))))

Pat

Daymay, I hope the yaz helps. I started taking compounded estrogen when I went through menopause and I haven't had a mood swing in the past several years. An added benefit is that the estrogen in yaz will do wonders for your complexion.

If you are diagnosed with an autoimmune disease, however, it's important that you tell your rheumy that you're taking it. In fact every doctor you see needs to know every medication you take.

Good luck and let us know if you succeed in getting an appointment.

Love,

Pat

Hi, Dana. Considering that your Dad has lupus and you see the same PCP, that may be just the help you need. I know you said you didn't want to worry your family, but I would think your family would be very supportive and more than understanding with already having dealt with lupus. Your Dad might be the perfect person to accompany you to your PCP to get that handled. I just know as busy as you have to stay in college, you sure don't want to be dealing with lupus and all its' BS in the middle of a test or semester. It could really end up costing you, you know? Good luck with whichever way you do try to handle it. I just hope you can find a way to get relief so this doesn't interfere with your college work. Take care,

Hi Daymay, So far you've named the following symptoms . . . could you list the others too? It might help some of the members here make suggestions. 18 yrs old Father, Aunt and Grandmother have/had Lupus swollen legs and ankles (not all the time) losing my breath when i walk upstairs poor circulation, a swollen eye (it closes shut like 2 or 3x a year w/a fever sometimes) back problems terrible mood swings are terrible

Daymay,

I'm sorry that your family dismisses your problems. Unfortunately we hear that frequently on the forum and when I have some time I want to discuss it in a new post. You sound very mature for your age and I'm proud of you for handling things on your own even though life would be so much easier for you if you had a better support system at home. You have a lot on your plate right now and I understand how much pressure it is to start a new year of college and have the financial pressures as well.

I do urge you, however, when you have the time and can see a rheumatologist, to find someone who specializes in lupus and rheumatoid arthritis.

In the meantime you might consider keeping a log of your symptoms, whether or not you think they might be related to lupus so that when you do see a rheumy you'll have a history of your symptoms written down. Then make sure the rheumy knows your family history.

Research indicates that the sooner people with lupus or lupus-like symptoms are treated with medications, the greater the probability the disease can be slowed down. Once you have gotten more advice from the folks here, you might write down a list of questions for your primary care doctor. It seems to me that the more informed we are when we go to the doctor, the more open doctors are about talking to us.

Hang in there and keep coming back here! We're glad that you've joined us.

Love,

Pat

Daymay,

My eyes swell up a few times a year and when they are at their worst, it looks as though a golf ball is wedged underneath my eyelids and my eyes are completely shut. Sometimes the swelling isn't as bad. This has gone on for 30 years. When my children were little they'd say, "Mommy has pig eye!" Now even I call it that and we all laugh about it.

But it's eally no laughing matter because it hurts, is uncomfortable, and there's nothing to do about it but wait for the swelling to go down. I put cold wet washcloths over my eyes and that gives me temporary relief.

My daughter is your age and is healthy and active. However, she has a positive ANA and once this year she also got "pig eye" I don't know if this is caused by lupus or not, but I have no idea what it could be.

I don't swell up with bug bites.

I'm sorry about your eye because I know how embarrassing it is to go out in public. A former boss confessed once that he thought my husband was hitting me in the eye. I assured him that wasn't the case.

Hang in there Daymay. You have a lot to deal with at your age.

I'm sending you a great big ((((((((hug)))))))).

Love,

Pat

I don't hv swollen eyes, but I do have back problem.  I cannot stand up for a very long time, because my feet will get tired.  Do u mean "poor circulation" is Raynaud PHenomeon where your fingers/toes turn color when cold?  I am no doctor, but it sounds like one of us, especially when you have a family history that deals w/lupus. 

I wonder if you can check with your school health service and see what kind of insurance they available for students.  Sometimes they have a good deal.  IF they do, see if you can afford it instead of using your family's. 

I know this period is pretty suck when you cannot do anything but in pain.  Hang in there.  There will be a way out.

P.S. Butterfly rash is a classic marker for us. 

hi daymay,
i have the same problem you do with the lower back, it feels like if you stand/walk or bend over like your back is gonna give way and you feel like falling over, mine has a lot to do with the way i walk, cuz i have avascular necrosis in both knees and my R ankle so walking correctly is very difficult. I had swelling before i was diagnosed with lupus especially in the joints, ankles and legs cuz the lupus affects my kidneys. i am actually the only member in my entire family (immediate and extended) that has lupus, and i know about the mood swings but thats from the meds, i was diagnosed at 13 and i know the easiest thing for me was that my mom was a fighter, she made sure that the docs gave us answers and did everything that they could to help me, i actually got then from her and now my docs work with me in managing my disease and not just talk at me.

in most colleges dont they have some sort of free clinic or something equal to that? if your college has one, that my not be a bad option to check out, cuz maybe if you can convince them that you need some kind of specialist maybe they can talk to your insurance company or you can try calling your pcp from school and get his office to get you your referral that way, i know that some docs are more open to helping with things like that especially when you are away at school. good luck, but dont ignore your symptoms cuz you never know what can happen, i tried that when i was in high school and it came back to bite me on the you know what.

I would call your insurance company and ask them for a few PCP/Internists names who are closer to you. I would definitely change doctors. Does your Aunt have a more sympathetic nature than your dad? If so then I would see if she would go with you to the DR. Also it is possible your dad said something inadvertently during a visit with his doctor that made the DR doubt you. Then again DRs tend to ignore womens' complaints. I started showing signs/symptoms (enough for a dx) around 13-14. My ANA is negative yet I am dxed due to having way more than 4 of the 11 criteria. Go to lupus.org to look at symptoms and criteria for dx. You would be surprised how hard it is for us to get help. I was close to 28 before I got someone to take me seriously and dx and treat me. I say visit the ER for your eye so you have documentation. I swell with any bug or spider bite or sting. I am allergic to just about everything. You need an allergist. You also need to take pictures of rashes, fingers turning colors, swelling, even your face because sometimes we do not notice rashes if they are light and always there. I suggest a dermatologist and an ophthalmologist as well, the eye swelling could be dangerous or benign but you need a professional who specializes in eyes examine you. Please do not put off pushing for medical care. Switch doctors and get SOMEONE who BELIEVES and SUPPORTS you to accompany you. Often having a witness will make doctors do more to find out what is wrong. Look into a University Medical Center- usually sliding scale based on income and usually enrolled with a lot of insurance companies. For a good doctor travel how ever far and where ever you find one. If you give a state and generalize location someone here might know a good doctor. Please listen to your body and get help. Lupus and a lot of other diseases can be life threatening if untreated. Also to get more support from dear old dad remind him that if lupus is dxed and properly treated early on there is a very good chance you will have a better outcome and if left undxed and untxed then you will only get sicker and sicker until you become disabled and maybe even die from complications. Not trying to scare you but giving you the facts as my rheumy presented them to me- I got really bad sick and am now disabled completely. I am sure your dad loves you and would not want you to have kidney and/or heart and/or other organ damage. Point out that his helping you make a doctor listen could be the difference between you becoming an independent adult or having to depend on family for the rest of your life. I wish you the best of luck. Remember to call your insurance for doctors you can see closer to you. If you have a PPO then referrals are unnecessary and you need to make it clear you have a PPO to the rheumy offices you call. If you have any other kind of insurance then you likely need a referral. I am lucky I have a PPO so I refer myself to any doctor I wish to see.

oh, and redrose, thanks for the comment! i wouldn't know if my aunt is more sympathetic because i haven't spoken to her in about 8 years. I really don't know much about her. and my grandmother died before i was born.