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Old 07-27-2002, 08:34 AM   #1
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Sela HB User
Question Is There An Answer?

Hi, I'am new here to this forum,, I was diagnosed with Lupus a few years ago but with a low titier ( I think that's how it's spelled),,, now i test negative but I have all the symptoms except for the classic butterfly rash. I was neaver one to complain except that it neaver goes away and was wondering if the first test was correct and the others were wrong. The Rhumatologist I went to acted like I was making it all up or something. I cried all the back home because I knew that what I'm going through is not imaginary. If it is Lupus ana negative.. wouldn't something point to it in my blood work?/ t-cells, histamine, sed rate? I was thinking about just forgetting about it and neaver seeing anyone again because I was so discouraged but I can't ignore the symptoms either. I was wondering if Lupus can poison your gallbladder and cause heart arymeia and brain problems. I had several MRI'S done and the spots were not there a year ago. Can some one point me in the right direction. I am on an HMO and I only have 1 Rhu. that I see, should I go for a second opinion? Thank You Sela
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Old 07-27-2002, 06:22 PM   #2
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Join Date: May 2002
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Denise F HB User
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Yes, I would get a second opinion. Read all you can
about lupus. There are plenty of books in the book store
and Lupus sites on the web. I often hear about people
who have Lupus symptoms for years before it actually
is confirmed by a blood test. The blood test is
just one test and it doesn't always show up. That's
why they use the 11 symptoms present to try to diagnose
Lupus. It can be a long road. Don't give up over one
bum Doctor.


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Old 07-27-2002, 07:08 PM   #3
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Sela HB User
Question

I guess what I need to know is wouldn't something have pointed to it by now, or can you be ANA Negative . In my last question I asked wouldn't histamines/ ANA/ Fana/ bloodwork/ t-cells....say something ? I was told that I may neaver get dxed and I have to learn to live with it. Thanks Sela

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SeLa
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SeLa

 
Old 07-27-2002, 10:29 PM   #4
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Sela,
I am ANA negative all the time excepting when my symptoms are severe enough to put me in the hospital for a week or so. By that time, I can't walk, I can't even get out of bed without screaming in pain. My brain by then is severely out of whack not knowing what's real and what isn't. I have other symptoms on a regular basis, with negative ana. I will have symptoms like "time-loss", (forgetting days, weeks, hours) hair falling out, cankers in my mouth and nose, abdominal pain (they keep trying to take my gall bladder out but it has no stones in it, they just keep thinking it does because of the pain...turns out to be excessive acid due to stress)a feeling of being "separated" from myself...like I'm floating separately from my body about a foot above myself, audio hallucinations, nausea, small fevers, irritable bowel, pleurisy, joint pain, migraines, etc etc etc etc. But, like I said, I show up completely negative until I need to have a steroid pulse to keep me alive. I had one doctor that listened to every little ache and pain I ever told her about. She was the one that diagnosed me correctly, after I had 7 or so false diagnosis. Then I moved.... I get nothing but idiots now that think I'm making things up, or am just bored or something and feel the need to take up their precious time. I'm on an HMO too, and it's very difficult to get one of those kinds of dr's to pay attention to a word you say. I was able to go see an endocrinologist on my HMO though. If you have any kind of female problems, see if you can go see one through your insurance. They should cover it. At an endo, you will have access hopefully to a more receptive dr. and drugs that really make a difference.

 
Old 07-28-2002, 01:19 AM   #5
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Location: Atlanta, GA , US
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scbagrrrl HB User
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Sela,
I tested negative for almost a year despite having all the symptoms but the butterfly rash myself. Rheumys are really best-suited to treat Lupus. Some focus more on arthritis than lupus - so ask questions. And read up - the arthritis foundation (arthritis.org) has lots of info and you can have info mailed to you as well. There is a TON of info on lupus online.

Take notes. Keep a journal of how you're feeling, your symptoms, your temperature. Write down questions for your doctor - and don't hesitate to monopolize his/her time. Ask questions and if they don't answer it in "english" or blow you off, ask again. Bring copies of your chart - keep it for your own records in case you see other doctors. Familiarize yourself with it. Managing the disease successfully means partnering with your doctor. Also his/her nurse can be your greatest ally/advocate - if you need to get in for a problem ASAP or need some meds, or have a question - the nurse can be a godsend.

Good luck. Be persistent. Keep us posted.

 
Old 08-23-2002, 03:09 AM   #6
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Location: Regina, Saskatchewan Canada
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Hi I am just new to this program. I was diagnosed when I was a kid with a disease that they had no name for, other then to tell my mother that it was a physical and chemical breakdown in my body. I had a rash that itched so bad that my dad would have to put socks on my hands to stop me from scratching, I suffered severly from gout, to the point where the only way I could get from point A to point B was to crawl on my stomach because I couldnt walk. I spent quite a few months in an isolation ward because they were not sure what it was that I had. I had tests done to see what I was allergic to specific things ie sugar and salt,they came back negative. I was on pills to put me to sleep, pills to wake me up, cortizone for the joint pain.
When I was 12 years old it disappeared and I had no problems from there on in. In 1991 when I was 41 yrs old, it came back. My fingers would have pins and needles and go numb, they would change from a normal pink color to a white and then to gray, the last step was them turning black, this all happened in a two week time frame. They tried different things to try and stop it nothing worked. What they diagnosed me with was raynauds phenoma, I was hospitalized for 3 weeks to try and save my fingers with an iv concoction of steroids and chemotherapy. My fingers were saved cept for a little piece. The other thing that I have found that is associated with Lupus is what they call PVD ( periferal vascular disease). In some cases the blood of people with lupus becomes anticoagulant, that is what I was told. Last year I had a bypass done on my right leg to save my foot, the first one didnt take, so they had to do another one that one didnt take either, they had set up an ultra sound to check and see how things were working and to the dismay of the doctor the vein that he took from my arm to put in my leg had blocked off. The bottom line,I was told if I started to lose the circulation to my foot again it would have to be amputated. I am now 52 and at the begining of this year had to have part of my leg below the knee amputated. My left leg has the same problem as did my right, because of what happened with the previous surgeries, should anything happen to my good leg they will have no choice but to amputate as well.


[This message has been edited by prairie wind (edited 08-24-2002).]

[This message has been edited by prairie wind (edited 08-24-2002).]

[This message has been edited by prairie wind (edited 08-24-2002).]

[This message has been edited by prairie wind (edited 08-24-2002).]

 
Old 08-23-2002, 05:01 PM   #7
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Location: Bradenton, Florida USA
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jsinfla HB User
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You know, not all tests are always positive. All my "lupus tests" are negative except the ANA - which is so high, doctors are amazed! Everything else and I mean every other test is NORMAL. So, go figure. This is a very complex disease, and not everyone reacts in the same way.
Try to see someone at a teaching university - just for another opinion. I am fortuant to have two universities near me. University of Florida and Univ of South Florida. i have benefitted from their immunology clinics and the doctors have always been a benefit to me by alternative suggestions and opinions. you can usually go to these clinics whithout a referral.

 
Old 09-22-2002, 07:56 PM   #8
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Friends HB User
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Sela,Have you ever had a anti-dna test done?This test is ususally positive in lupus patients.But just because it is normal does not mean that you don't have lupus. Some people are diagnoised with lupus and they have negative test results. The Rhematologist have to know about lupus to understand it.There is a 11 criteria chart that doctors use and a patients medical history and symptoms.Also,a patients family history to. Lupus can also show positive blood test and then be negative at other times throughout the disease.THis is what my doctors have told me. Please don't ignore the symptoms. I had symptoms for a while but never associated them to much of anything.Then it all hit. From everything I have been told and read,we can have a normal life span if we get proper treatment.Alot of people don't know that they have the disease until it is to late and to hard to treat.I have learned that we have to take our health into our on hands.It is hard whenever we don't feel well and it is exspensive to go to different doctors.but if we don't take care of ourselves who will. I truly wish you the best!!!!!! I am a christian and I pray and ask for the Lord's help daily!!That is how I deal with all of this.GOD BLESS!!
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Old 09-23-2002, 10:51 AM   #9
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Ceya HB User
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I am sorry your doctor treated you that way. When I first went to the Rhemotologist I just knew he would think I was crazy and infact he knew where to start.
My blood work showed high in parvo virus b19, later my ana was borderline, but everything else is normal.
Now he has unoffically diagnosed me with lupus due to the symptoms and leghth of my illness. Hopefully you can find someone else.

 
Old 10-02-2002, 11:05 PM   #10
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Join Date: Sep 2002
Location: WI.
Posts: 109
De Lou HB User
Post

HI I am not an expert here but thought I would share a bit. I have MS. Lupus, Lyme disease, Fybromialgia & Chronic Fatigue syndrome all have the same symptoms as MS. However I did have an MRI done and I have severl lessions on my brain so Right away I was sent for all this lab work to rule Lupus & Lyme disease which do do that to your brain.After the lab work then I went for the spinal tap which confirmed the MS. So maybe talking to a Neuro might be of little help or searching the web md. I hope this did not sound so know it allish. Just thought it might help.

DE

 
Old 10-05-2002, 10:36 AM   #11
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Sela HB User
Smile

Yes, Ive had all the tests run that they can run and like I said before nothing shows up, just recently I would say about 6 months ago my ankles swell up. I neaver even had them swell when I was pregnant,,, but now for some reason they get so bad I have to elevate them. I haven't gone back to a doctor since I was more or less told it was *all in my head", but I may have my primary doctor run some more tests to see if anything has been changed. I want hin to do the BUN Test I think it's called to see if I'm leaking protein. I just don't want to get back into that whole Dr. thing where I'm running around like crazy and nothing gets solved. My symptoms started around "93" and have not gotten any better, I was told that I may have to live with it. The only Dr's that have been kind and concerned are my Primary care , and my Nero. , he claims and believes that I have Lupus , he's got it written on my chart to this day. They are the only doctors I see because my list on my HMO has been so narrowed down for Rhumeys that I have to travel really far and the one thay have is about worthless. So for now untill the list changes I will just continue to see the same ones. As far a s the memory goes , loss of time, forgetting things, brainfog, it makes me so mad and angry!, my husband understands me but he does know what I'm going through, I feel like I have lost half of my brain, and I have Al,,, can't spell that word. The frustrating part is forgetting where I put things and time loss. I want to thank those people in here who have been so helpful and understanding and taking the time to listen, it meant alot to me . Again Thank You so very much, Sela
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