tested for lupus when I was 6

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New Member

Date Joined Jun 2007
Total Posts : 13
   Posted 6/25/2007 7:23 PM (GMT -6)   
I just received my medical records from when I was a child. I am now 30. Apparently, they were looking into lupus. I had the butterfly rash for 3 winters, but it went away on its own. My ANA was 1:80, then 1:40 and now my ANA is 1:60. I has some symptoms, but nothing ever came out of it. It can't be a coincidence that now I suddenly develop all of these autoimmune issues. I need to follow up with my doctor. Anyone have any thoughts on this? I don't mean to be redundant in what I write, I'm just so confused. I should say that I've never been diagnosed with lupus.
Hashimoto's Thyroiditis, Pernicious Anemia, Undifferentiated Connective Tissue Disorder, reynoids. Monthly B-12 shots, Plaquenil prescribed, but haven't started on it yet. All diagnosis within 10 months. Positive ANA with a nucleolar pattern. Rheumatoid factor is sometimes positive and sometimes not.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/25/2007 8:09 PM (GMT -6)   
Steph, I agree that it's most likely not a coincidence. I think there are several people here who said they have had symptoms on and off for a great deal of their life. Sometimes these illnesses can be doormant or in remission, sometimes for a long time and then they rear their ugly heads and strike hard. RIght now it's really important that you have a good rheumatologist that you trust and can talk to about all of these issues and see what he/she thinks about your history and how it might fit with your present symptoms. As things progress, your rheumy may be better able to sort out what type(s) of connective tissue disease you have.

Don't ever worry about asking too many questions. These disease can be difficult to figure out and can be confusing, so ask away, that's what we are here for.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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New Member

Date Joined Jun 2007
Total Posts : 8
   Posted 6/26/2007 1:33 AM (GMT -6)   
I might suggest that when you get your labs done, make sure you aren't feeling well at the time. If you are having a good day and everything feels good when you get your labs done it might not show what is really going on correctly.

When I was first diagnosed my Dr. made me come in several times to do labs until she caught me on a bad day and got a positive ANA result. She said my ANA was "barely positive" but that she was certain I had lupus. Lupus is progressive though and the earlier you can get it diagnosed and get treatment the better.

Years later....
Right after I woke up from a coma, after being on life support and taking high dose chemo for several months, plasma pheresis, blood transfusions, high dose IV steroids... they did an ANA test on me and it was negative. WOW!

Did I all the sudden not have lupus then after going through a near death experience from lupus?


Could they explain that?


Three months after that I was again testing on the positive side of the ANA tests. bummer.

Get a good Rhuemy that you can talk to and get to the bottom of things. I wish you good luck! I know it's hard.

How far would you go to cure lupus?
We're going to 15 thousand feet above the ground.
Come with us!

New Member

Date Joined Jun 2007
Total Posts : 4
   Posted 6/26/2007 2:30 AM (GMT -6)   
Hi there

I was diagnosed when I was 18 but when I was 13 I had swollen saliva glands the doctors thought it was a state of recurring mumps. I felt like my life was over when I was diagnosed. It just seemed unreal. the lupus made me a stronger person. I became more positive and sure we get our off days but we also learn to appreciate the small things in life :)

Regular Member

Date Joined May 2006
Total Posts : 236
   Posted 6/26/2007 3:27 PM (GMT -6)   
Steph - I was one of the ones who were borderline since teen years and wasn't diagnosed until 35/36 years old. Like Lupus leaper said when I was sick the tests were positive. Sometimes it took a month or two to get the test, I was better and the tests were negative. The ANA's didn't show up positive all the time until I had Lupus full blown. Some of my other results are back and forth even to this day, others are now a steady constant.

My daughter, like you, has had symptoms since 5/6 years old (she is now 10) mostly malar and discoid rashes, liver, glands, nervous system, gastritis, costochondritis as well as the flare symptoms. It is like clockwork with her now. She goes out in the sun all day. Week later fever, rash, stomach ache, migraines and no appetite. Week after that some kind of system inflammation or neuro problems. Just like dear old mom. Her doctors and myself realize it is Lupus, but there are no definitive markers for her yet. I would love for those bloodwork results to just say a definite yes or no. I want her to be on stronger medication and nip it in the bud.

I am glad to see they gave you medication. Please take it. Either way, it is a connective tissue disease, and you need the medicine. I wish I could have been medicated sooner to help stop the progression. I'm still waiting for medicine and getting worse. I want to encourage anyone who has this chance to benefit from having medication available. Lupus is not an easy thing to digest. I still think my Lupus will go away and get mad 6 months later when it comes back. You do get better at handling it, there are still times I am overwhelmed, but a whole different attitude now. I realize everything is okay and live to appreciate all that is around me that I cherish so much. I too am much stronger than I ever thought possible. My family even placed bets that I would live longer than all my other relatives because I have made it through so much. I don't know though, my great grandmother died just 5 days before she turned 100. That is a steep hill to climb even for me.

You know, her husband, my great grandfather was 88 when he died from Lupus. Goes to show you just don't know what life will hand you. 88 is not bad.

Here is to all of us and a long blessed life! - Kristin
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  

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