Like a Family! - Lupus Message Board

DeeDee · 05-31-2001, 03:36 PM

Hello, Everyone! Wow, this is like finding a family I never knew I had! It is so comforting to read over and over symptoms that are carbon copies of mine. It is sad that so many people suffer with autoimmune disorders, but finding out it's not all in my head is like a long drink of water on a sweltering day. What relief!

I've known something was definitely wrong with me for about a year now. The symptoms have been there since I was a child, but my connecting them to a single disease has taken this long (I am soon to be 30). I requested to be tested for Lyme and also arthritis, both of which came back negative. My family had begun to think I was health-obsessed or a hypochondriac and I could tell were growing weary of my multiple and ever-new symptoms. The symptom finally tipping the doctors is recurrent mounth ulcers. When the ENT MD suggested testing for Lupus, I almost declined. I didn't want to tell my family I was having another test and then having it, too, come back neg. But thank goodness, I had it done and the ANA was positive at 1:160. I had conflicting emotions when finding out, but I'd have to say the first and most overwhelming was "YES! I have a MEDICAL problem! It is not all anxiety. I finally have something definitive to tell my family. Break out the champagne!" Luckily, others have had this paradoxical (?) emotion when learning they have a potentially life-threatening problem!

Now I'm awaiting results of new batch of lab tests--one result came today: neg. for anti-double-stranded DNA. I must say I have a twinge of fear that no other test will come back positive--I so want a diagnosis for all of my symptoms. Also, I am afraid my family will again come to think my problems are emotionally based if battery after battery of tests come back neg.

Having somewhere to vent where others share my problems (and some of you NEVER get a positive test result) is more comforting than I can say. I will post more about my symptoms/results and reply to others soon, but I don't want to wear out my welcome! Sorry this is so long....thanks for listening!! Hopefully we can ease each other's pain a bit--if only in sharing information and lending a caring shoulder/ear.

DeeDee

Ann S · 06-01-2001, 09:29 PM

DeeDee,
Welcome to the board! Feel free to post as much as you want or have the energy to do so. Sometimes I think that having these 'listening ears' here on the board is the only thing that helped me keep my sanity when I first started going through all this. As you probably already know, it's hard talking to the average person, even if it's a friend or family, cause a true understanding just isn't possible. Will be waiting to see how your tests turn out, Ann

Irish · 06-02-2001, 03:50 PM

DeeDee:

Yes, for heaven's sake, get all those tests done. There is nothing worse than wondering about what is wrong with you. With Lupus, the aches and pains change as often as the moon does. I kept my aches and pains secret for almost 2 years until I had to give in and go get some tests run. I don't like going through all that testing, but at least I know what is wrong with me and don't have to guess.

The most important thing is to pick a good doctor. I have a very caring and sympathetic family doctor and an excellent rheumatologist. They listen to my questions and don't laugh at me. They try to give me an answer. When I want to get off a certain medication they work with me if at all possible. So, get yourself a doctor who knows his business. Ask around if you don't already know of a good one. There are still some left who really care about their patients and I have two of them.

Good luck to you in your testing.

Irish

Irish · 06-02-2001, 03:52 PM

DeeDee:

Yes, for heaven's sake, get all those tests done. There is nothing worse than wondering about what is wrong with you. With Lupus, the aches and pains change as often as the moon does. I kept my aches and pains secret for almost 2 years until I had to give in and go get some tests run. I don't like going through all that testing, but at least I know what is wrong with me and don't have to guess.

The most important thing is to pick a good doctor. I have a very caring and sympathetic family doctor and an excellent rheumatologist. They listen to my questions and don't laugh at me. They try to give me an answer. When I want to get off a certain medication they work with me if at all possible. So, get yourself a doctor who knows his business. Ask around if you don't already know of a good one. There are still some left who really care about their patients and I have two of them.

Good luck to you in your testing.

Irish

DeeDee · 06-02-2001, 10:26 PM

Thanks Ann, Irish for welcoming me onboard! I swear it is just the best feeling to be able to share with others taking this same cruise! Sometimes the water is bumpy, other times it is smoothe. But if you've never been on the ship, it is hard to understand seasickness. Thanks for being sick with me guys--HAHAHA! Not a very funny joke...But seriously, I look very forward to sharing much hope and companionship with you all. Hope everyone is enjoying a mild-symptom day! Take care. DeeDee