View Full Version : uncertain

01-25-2004, 01:53 PM
Hi, I joined this site today while I was browsing the internet in my continued search for...well, anything. Hints, clues, facts, comfort.

I'm 18 years old, an active musician and photographer in my senior year looking forward to my college plans on the horizon.

For the past couple years I've been plagued by a variety of symptoms that come and go, but only originally went to the doctor to complain of chest pain. I've had numerous tests and been to a few specialists to rule out heart and lung problems. The only things definitely found and diagnosed in the search are mild exercise-induced asthma and Raynaud's syndrome. The rest of my symptoms were wrote off as due to stress (which may have made sense a while ago, but my life and attitude as of last year has grown extremely calm) or being a teenager. The first doctor I went to advised me to seek counseling in order to "lower" this "stress", though the only thing she tested me for was iron anemia.

Last week I finally saw a rheumatologist about Raynaud's after my latest regular doctor told me she had no clue and I should look for second opinions. He seemed to know what he was talking about and had an idea of what it could be but didn't want to say anything until the bloodwork came back. My next appointment isn't until February 27th, and I'm extremely anxious and scared...scared of the diagnosis and scared that there won't be a diagnosis and I'll be back to square one.

My mother and I both began researching separately in December when I started to feel worse and we both came up with Lupus. It seemed (by his questions and list of bloodwork) that the rheumatologist was considering this as well.

I'm not sure what I'm looking for here, perhaps just anyone who can give me advice to ease to anxiety or even just to drop me an e-mail and help me confirm suspicions or suggest ways to deal with the situation until I can see my rheumatologist again.

It all just seems rather nebulous to me, but I'm tired of not being able to keep up with my peers, or even to physically keep up with my mentality.

Thanks for your time.

01-27-2004, 12:45 AM
Hi Algr;
Yes, you are correct. The diagnosis of LUPUS is a long and complicated process and the waiting for various results can be almost unbearable.
As you know, this site is dedicated to my daughter. She was diagnosed at the age of 19 after having 3 years of unexplained (or should I say mis-diagnosed) symptoms. She was told that she was suffering the results of stress! That, the problems with her heart were her imagination because she was too young to have heart problems!
Finally, like you, we took her to a rheumatologist who did all of the blood and lab tests and diagnosed her with LUPUS, Raynauds, Pericarditis and Pulmonary Hypertenstion.
I tell you this to say to you that you and your parents must be aggressive with your doctors. Your symptoms ARE NOT in your head! They are very real and require monitoring and treatment.
I am glad to hear that you have taken it upon yourself to become informed. That will be your greatest weapon.
There are so many new treatments for LUPUS and its symptoms that the prognosis can be very promising. You may find that you will need to make some radical changes in your life in order to manage your illness (if you are indeed diagnosed with LUPUS). Once you become comfortable with those changes, you will find it easier to do all of the things that you want to do (in moderation).
Keep us advised of your test results.....ask us any questions that you may have....We are here to help you and to support you!
Best Of Luck

01-27-2004, 12:27 PM
Thanks for your reply. It's good to know that I'm at least going about this in a productive way.

Unfortunately everything I research has me increasingly paranoid. It either makes me think for sure that my tests will point to Lupus or that they will definitely not and I'll be back to square one. I think trying to live my life I ignored a lot of signals from my body so I feel extremely out of touch with how I feel most of the time. Only recently when things got a bit worse did I realize how much it's been affecting me despite my efforts to ignore the discomfort.

I just hope I'm at the right doctor for my problems this time. And I hope that whatever treatment options I have they will be effective. The last time I agreed to try something, it was experimental and I had an allergic reaction.

My father is unaware of my problems and my mother has been researching on her own (she didn't actually believe me until I developed Raynaud's, which gave her the visible proof). She suggests I log my symptoms, but it seems like that would take up multiple notebooks between now and the end of February.

Most of what I read seems to be advanced stages. On the first onset of Lupus do things tend to be more subdued in the absence of kidney and heart involvement?

And how about the neurological effects/symptoms...I haven't found much information about that in its milder onset either...

Ach. I'm just full of uncertainty.

much thanks,

01-27-2004, 08:50 PM
It's hard waiting for Doctor appts, especially when you anticipate news of any kind. When I was in the "waiting game" it caused me a lot of anxiety (I was starting to feel paranoid, too), and I even called the Doctor to move my appointment sooner. That really helped me. Sometimes if you tell them how worried you are, they can at least give you some information over the phone. I also did things to help distract myself - things I knew I particualarly enjoyed.

I really relate to your situation - I'm 26, and recently diagnosed with SLE. My bloodwork looked "bad" for years, even when I was practically symptom-free. My little sister was diagnosed with Rheumatoid Arthritis when she was 20 - then they later figured out it's actually mild Lupus. She's 24 now, and is finishing up her graduate degree. She also lived in Korea for a year. So, even if you do get a "diagnosis", it doesn't mean your plans are over, though a little adjustment might be necessary.

I wish you the best in everything. The waiting is the worst - I know.