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Old 04-26-2006, 11:59 AM   #1
Join Date: Oct 2003
Posts: 94
tammq HB User

I had a question. I've been sick for several years and have been trying to get a dx. It was thought that I had MS for awhile but nothing shows up on MRI. So had lots of bw and consults with my rhumie and now I've been diagnosed with MCTD. He says LUPUS is likely to be the culprit. I've had several episodes (waxing and waning) But 2 weeks ago, my daughter came down with a "stomach virus" she ended up in the hospital, and within 2 days, so did I. The stupid staff at the ER diagnosed me with having a, I feel like suing them for negligance. I was in the ER for 10 hours, by the 7th hour the naseau was getting better but I was in extreme pain. My hip hurt so badly, I was wailing and in tears. My knees were next and then finally my arms. All the joints in my body were screaming and so was I. My question is, having LUPUS....are you more susptible to "catching" bugs like a stomach virus or cold, or flu?

I've gotta make another appt to see my rhumie b/c I still haven't recovered from that episode 2 weeks ago. I thought I would die in pain. When I asked for some pain medicine, they looked at me like I was crazy. Why would I need pain medicine if all I had was a urinary tract infection? Man, I still can't get over how stupid that dx was.

sorry this was so long...but I'd really appreciate any comments.

Thanks so much!!!

Southern Girl
spondylolisthesis grade 4
contemplating surgery
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Old 04-26-2006, 01:17 PM   #2
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Posts: 104
Suni321 HB User
Re: Lupus

Hi Tammq, sorry to hear about the ER trip. Hope you & your daughter are feeling better. SLE - Lupus patients often do seem to be more open to catching infections (after all w/Lupus your body is attacking its tissues/organs already - not being able to tell what's good & what's not).

However; for many Lupus patients due to the medications they are on - they are even more at risk. For example; the steriod Prednisone lowers the persons immunity & you're advised to avoid places/people who are sick.

I know personnelly the last couple of years I've gotten sicker more often than I ever did growing up. And my SLE symptoms were getting worse. Currently I just got over a very bad bout with the flu that put me out for days.

But, I really encourage you to find a Rhemu Dr. you can work with to get a solid diagnosis and treatment plan. That way you get on track to feeling better soon.


Old 04-27-2006, 11:23 AM   #3
Join Date: Oct 2003
Posts: 94
tammq HB User
Angry Re: Lupus

Thanks Suni. It's very frustrating, the dx part. My ANA has been done 3 times..The first time it was positive, the second time it had doubled and the third time it was negative. My internist said that proves the course of lupus, sometimes you hit a remission, which is why the ANA was neg on the 3rd time. You begin to feel like you're crazy, b/c all the docs do is send you to another doc.

I've seen neuro, internist, Rhumetologist, regular family practictioner. I've had CT's, MRI's, BW (out the wazoo!!) X-Rays, Hearing Test, Carotoid Artery Study, EMG/NCS, Bladder Testing, Even had a stomach scope (forget the name of it) test.

I've been told maybe I'm just depressed. YOU THINK? IF I wasn't before all of this, I sure as he#$ am now

You would be too if you just keep seeing doctors, spending loads of money and continue to feel like #^&*

This is what I'd just love to say back to the docs that I've seen. My rhumie told me during my exam "I'm not sure I'm the one you will need to be seeing" and he sent me off to the neurologist. The neurologist said, "I think you have a slight bit of carpal tunnel in your hand, but that doesn't explain the symptoms you are having" So, he sent me back to the rhumetologist. Back and forth, up and down like a yo-yo!!! I know I have something. I'm not crazy or depressed. My internist told me "You know, science just hasn't caught up with these autoimmune diseases. I wish I had the answer."

WHAT????? PLEASE>>> there's gotta be a better way of going about getting diagnosed. How many of you have had stuggles with this? I've had a ton of abnormal bw but the lupus panel was ok except for the ANA. HMmmm...

Sorry, it's good to vent. I know I'm not the only one in this boat. But it's a lonely boat to be on.
Southern Girl
spondylolisthesis grade 4
contemplating surgery
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Last edited by tammq; 04-27-2006 at 11:25 AM.

Old 04-27-2006, 11:55 AM   #4
Join Date: Feb 2004
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Lupus

Tammq, I can appreciate every word you wrote. Here's a question: have blood tests been done to look for something MORE SPECIFIC than ANA?

I ask because I spent years being ANA-negative. I don't think I was tested for specific autoantibodies until about year 6 of getting circular nonscarring rashes & a whole slew of other problems (incl. anemia). It was in year eight that anti-Ro autoantibodies were found. The Dx was the SCLE subset, in which ANA is positive maybe only 70%, or so, of the time. My ANA *never* turned positive---but I wonder if anti-Ro would have been found earlier, had it been looked for. My drs. told me that it's believed that anti-Ro can "mask" the ANA findings, sometimes.

I was wondering this because I think my local drs. got totally hung up on JUST the ANA result, even ignoring multiple skin biopsy reports that all came back heavily suggestive of lupus. Sympathetically, Vee

Old 04-27-2006, 12:27 PM   #5
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Join Date: Apr 2006
Location: Baltimore
Posts: 112
kidd123 HB User
Wink Re: Lupus

Hi Tammq,
I was just diagnosed with Lupus a month ago. This must be a HUGE boat to hold all the people who are struggling with this type of disease. The book,"Taking Charge of Lupus" states that there are more people with Lupus than all of AIDS, cerebral palsy, MS, sickle-cell anemia, & cystic fibrosis combined!
Since I had a bad experience with my rheumie, I am just going to try another one. Not much else we can do, except hang in there and keep trying to get a diagnosis, info and treatment.
Hope you find some help soon!

Old 04-27-2006, 03:03 PM   #6
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Join Date: Mar 2004
Posts: 135
kimnyc HB User
Re: Lupus

Wow... it's so strange that you ask that question...

I was diagnosed with lupus about a year and a half ago. I have had some bad times since then but nothing like the flare that led me to the doctor in the first place. I also have Hashimoto's thyroiditis. I am on plaquenil, levothyroid, and, some days, up to 1800 mgs of ibuprofen. I get fatigue, aches & swelling in my joints (knees and elbows in particular), rashes on upper arms, brain fog, etc.

ANYWAY... I find that I am more likely to get an illness if it's floating around the high school where I teach. Two weeks ago, I came down with a stomach bug. My boyfriend came down with the same bug. He threw up once and felt better in about 36 hours. I, on the other hand, threw up 7 times over the course of 12 hours and was so achey the next day that I couldn't get comfortable enough to sleep through the nausea. It then took me almost a full week to feel even remotely like myself again. I was exhausted; I barely ate; my aches got better but I still wasn't right. I emailed my rheumy during the third or fourth day because I was worried. She told me not to worry, that it could take up to a week to feel better, and to call my my primary care physician if I wasn't feeling better after that.

I have a positive ANA and, in the past, protein in my urine. I haven't had the protein problem in awhile, thank God, and no other positives on the more specific tests for lupus. I work with a big hospital in NYC and love my doctor. You should absolutely have the more specific tests done for lupus, and please don't let people make you think you are crazy!! The first endo I went to for the Hashimoto's did the same thing; I then went to a highly regarded endo and he had no problem putting me on thyroid meds based on my high, high, high antibodies.

Hope my input helps in some way!

Old 05-03-2006, 10:59 AM   #7
Join Date: Oct 2003
Posts: 94
tammq HB User
Re: Lupus

Thanks so much for all of your support. I just completed a move this past weekend and I think I've got one foot in the grave. My hands have swollen, and my legs are killing me. Whew!!! I hope I don't have to move again for a very LONG time!!!

I am going to follow up with my rhumie. I was supposed to f/u months ago after seeing the neuro and having the EMG/NCS. I know they've gotta have those results by now

Physicians are so frustrating on one hand, and a life saver (literally) on the other. Does anyone here have skin problems with their lupus? I have extremely dry hands and cracks throughout both hands. My fingers split open, very painful, and they swell. Anyone here that can relate? Sorry, I know it's not a very appealing sypmtom...

If I could get about 20 hours of sleep, I think I'd feel better. I really feel like I'm getting ready to crash and burn. Insomnia has set in.

Thanks again everyone!! I will certainly follow your advice.

Southern Girl
spondylolisthesis grade 4
contemplating surgery
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