PDA

View Full Version : Feel so down...Am I crazy



teresa0992
06-15-2012, 11:19 AM
Good afternoon,
I introduced myself awhile ago but I am more of a lurker as I have no firm DX, and I was just wondering how long it took for people to have a dx after their symptoms started.

My reason for asking as I have had a fever for more than 6 months with varying levels of fatigue and joint pain. My face always looks like I have sunburn across my nose, cheeks and chin, and I am losing hair like crazy. I have been to my primary doctors numerous times and he is very believing of me. He has sent me to the infectious disease doctor twice, 2 different endocrinologists, and a rheum dr this week. I have had so many tests and everything comes back negative. Rheumy had me do a bone scan which shows no inflamation and all tests still neg.

I feel so deflated because even though I do not want to be sick and labeled, I just want a definite answer so I can be treated. My Rheumy is suppose to call me later, so I will be interested what he says or if he is going to dismiss me as normal.

Do symptoms start before positive bloodwork?

Any advise would be appreciated as right now I feel pretty down on the whole situation.

Thanks-
Teresa

tgal
06-15-2012, 05:48 PM
Oh Teresa your story is like that of so many of us! We know you don't want to be sick but that doesn't mean you don't know what is wrong with you!!! For some people a diagnosis is rather quick however the majority go months or years fighting for one. You are not alone in this. Also, just because you don't have a diagnosis doesn't mean you should be quiet! Talking here will help you feel better and it may even help you know what things to tell your doctor so...

Join in the conversation my new friend. You are now part of our WHL family!

Marine wife
06-15-2012, 06:35 PM
Teresa I'm sorry you are going through this. It can and is very frustrating. I hope you can get some answers soon so you can start some form of treatment. I had symptons for a few months when I went to the doctor with it. My blood tests were able to confirm it rather quickly but no everyone on here is that lucky.

steve.b
06-15-2012, 09:35 PM
teresa,
i went about 30 years, before being diagnosed.
it can be a long journey.

and yes it is not uncommon to be "sick" and have normal bloodwork.
this is part of the reason auto immune disorders can be hard to diagnose.

rob
06-16-2012, 11:04 AM
Good afternoon,
I introduced myself awhile ago but I am more of a lurker as I have no firm DX, and I was just wondering how long it took for people to have a dx after their symptoms started.

My reason for asking as I have had a fever for more than 6 months with varying levels of fatigue and joint pain. My face always looks like I have sunburn across my nose, cheeks and chin, and I am losing hair like crazy. I have been to my primary doctors numerous times and he is very believing of me. He has sent me to the infectious disease doctor twice, 2 different endocrinologists, and a rheum dr this week. I have had so many tests and everything comes back negative. Rheumy had me do a bone scan which shows no inflamation and all tests still neg.

I feel so deflated because even though I do not want to be sick and labeled, I just want a definite answer so I can be treated. My Rheumy is suppose to call me later, so I will be interested what he says or if he is going to dismiss me as normal.

Do symptoms start before positive bloodwork?

Any advise would be appreciated as right now I feel pretty down on the whole situation.

Thanks-
Teresa

Hi Teresa,

I'm sorry you are having such a tough time. Nobody wants to be sick, and labels suck, but you need and deserve an answer so you can start treating the problem.

I was lucky in that my SLE diagnosis came relatively quickly. However, after being here at WHL for a few years, I've learned from others just how awful it can be to be stuck in a diagnostic limbo. Trust your own judgement, and what your body is telling you. Stick to your guns and don't let anyone tell you you're a hypochondriac.

We can't diagnose people here obviously, but if there was ever a set of symptoms that sounds like Systemic Lupus, it's yours. I hope you don't have SLE, but there's something wrong and you need to know what it is.

Whenever you need to talk, we have great listeners here nearly 24/7, so please don't hesitate to speak up. And remember, actually having a Lupus diagnosis has never been, nor will it ever be a membership requirement here at WHL.

Please make yourself at home,

Rob

teresa0992
06-16-2012, 03:06 PM
Thank you everybody for the warm responses. One thing I am really learning is patience...and I know time will tell. My rheumy didnt call Friday afternoon and he is away next week, so I guess I will learn his thoughts the next week. I am not sure what his plans for me are. Because I have had a documented fever for more than 6 months now, I know there is something wrong. I went from working 50+ plus hours at a job I love, plus taking classes towards a degree, plus so much more to now barely working 40 hours, dropped classes and struggling to take care of my house and family. So, I will keep pushing on. If this rheumy doesnt suggest a treatment plan then I will just go back to my primary Doctor and ask what is next, because he knows there is something wrong also. I have read about so many people being in limbo...I hope my Dr understands this frustration and has a plan.

Thanks again for the support.
Teresa

magistramarla
06-17-2012, 06:22 PM
Teresa,
Good luck. We're here when you have questions.
Hugs,
Marla