The waiting is hard... - Lupus Message Board

DeeDee · 06-04-2001, 09:16 PM

Well, I started writing this a few minutes ago and did something wrong..if part of it appears twice, sorry!

I hope everyone is doing ok. There haven't been many new posts lately. I've read all of the ones on page 1 and I wonder how Life With Lupus (or whatever affliction you may be living with) is going for you all. Hope you find the time and energy to give an update soon!

Anyway, the reason I'm writing tonight is to let out some frustration. It has been about 1 1/2 weeks on the 2nd set of tests and only 1 result is in. Does it always take this long?? AAAGGHH! I guess I should start getting used to it, since it seems that testing on a routine basis is necessary to track the progress of these diseases. I just want to know WHICH disease it is that I have! Maybe when I find out, I'll wish I didn't know, but right now being in the dark is hard to handle. Maybe tomorrow some results will come in...If they don't soon, my doctor will be changing his number to keep me from checking all the time!

Take care, All
DeeDee

SusanM · 06-05-2001, 02:54 PM

I know when I had some tests once it took a couple of weeks to get the results because they had to use a distant lab because of the specialized tests. That may be why it's taking so long. I'm supposed to go in for some blood work today, and don't really want to. My doctor thinks I'm a *** I'm sure. Hope your result come in soon. Susan

Ann S · 06-05-2001, 08:38 PM

DeeDee,
Those specific tests took a long time for me too! Like Irish said, most small labs aren't equipped to do them and they have to send them away. Another warning though, you may still not know which diseases you have even when they come back. The first bunch of specific ones I took all came back neg. Then I went to a Rheumy Dr. and he diagnosed me using a physical exam, family history, and history of symptoms. Since that time, some of my test results have changed from neg. to pos., but they haven't changed the dx, only added some things as more symptons appeared. The test comparisons are often used as an indicator of the progression of the diseases. For a lot of the autoimmune diseases there aren't any specific tests. Also, you may get diagnosed with it even if the tests come back negative. It's all very confusing and complicated. Try using the waiting time to do some research on it. One of the sites that I remember had a full listing of all the AI diseases and info about them was the readers'digest health site. A search on google.com always brings good results too.
Welcome to the board and come back soon and often. Also, don't be put off by late or slow responses....sometimes it's cause of the nature of the disease.
Take care, Ann

DeeDee · 06-06-2001, 12:38 PM

Thanks for the replies, guys. Susan, I hope you ended up feeling like going for your blood tests on Tuesday. I am sure the repeated needle-sticking and doctor visits get old. I am going to have a lovely time trying to get to the doc regularly as I have no babysitter. Luckily, I don't work. But the nature of my husband's job is such that he has a VERY difficult time ever getting a day off, regardless of reason and the rest of my family lives 5 hours away. Just more whining...sorry. We all have our crosses to bear and I am thankful that mine is not heavier.

Ann(btw, my mom's name is Ann!), I have been reading everything I can find! Thanks for the info on Reader's Digest site--hadn't found that one. Will try it out later.

Yeah, I am aware that the specific tests may come back neg. I am still hopeful, though. I know I have something wrong, so a positive test result can only help. Still seems so weird to be HOPING for a pos. How many other diseases do people hope to NOT come back negative?? Just another weird thing about this weird disease!

Let's see. Family history. Maternal grandma has bad diabetes. Also has/had psoriasis and endometriosis (I read somewhere about a link with AI??). My maternal grandpa had rheumatoid arthritis--his brother had it to the point of crippling. My mom has carpal tunnel and ulna nerve problems, Barrett's Esophagus, Irritable bowel, (had)endo, colitis, intestinal polyps, breast lumps (benign, thank God). My dad gets nose sores, has the STRANGEST skin colorations, about everything else you can imagine including CHF, breathing problems, heart attack, severe, debilitating stroke--all by early 50's. Of course, he is very overweight and also was exposed to Agent Orange, so who knows. A maternal cousin also has been constantly sick whole life to the point of numerous hospitalizations--don't know the ins and outs, but he did/does have lots of skin problems and I believe asthma. All of this and I KNOW I am leaving out 1/2 of their problems! As for my symptoms, that will have to be another post. I am sure your heads are spinning now and my fingers are gonna fall off typing if I add all of my ailments!!

Everyone, enjoy your day to the fullest. We don't know when tomorrow may turn out to be worse and then today will not seem so bad. DeeDee

Ann S · 06-06-2001, 03:28 PM

DeeDee,
I think I read somewhere that for family history the female line is the one that passes it. The RD site has that long list of all of them and then you can go into the Dr. with the ones that are relevant. I was really surprised when I saw some of the ones on there.
I want to emphasize a point I made earlier......if the tests are negative, it does NOT mean that you aren't sick! YOU ARE and you're NOT imagining it.
Like one dr. explained to me, they often call it evolving, overlapping or mixed connective tissue disorder because it keeps evolving, or changing.........sometimes, as time goes by, it evolves into specific diseases, but sometimes it just stays mixed (meaning that you have symptoms of various AI diseases, but not enough in any one specific area to put a specific dx on it.). There is a dx called mixed connective tissue disorder.
Anyway, keep in touch, Ann