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weddingbx2
10-25-2006, 04:56 PM
Hello, I am certainly new here, but not new to understanding Lupus. I need some advice, I lost a daughter 3 years ago to Lupus after an 8 year battle when she suffered complications of Pulmonary Fibrosis in her lungs. Her sister is now 33 and started having Raynaud's Syndrome this past summer in her fingers. I was concerned, but didn't react, as she as well as I, know one of her sister's first symptoms was Raynauds with also joint pain. She does not have any joint pain. She was down this weekend and her dad and I noticed her feet were black and I asked her what her doctor had said about it. She said they did an ANA and it came back negative. My other daughter's came back terrible after it took a year for doctors to diagnose her, which of course, caused her condition to worsen over that year. We had gone to many doctors at that time and none took her complaints serious. Finally one did the ANA and it was off the charts and he was amazed no other doctor had even offered the ANA. Now, I have told her the negative results mean absolutely nothing and she needed to go to a Rhematologist and insist on
further testing. I know I am reacting as a mom, but there is no doubt in my head that she has Lupus. I have RA, my dad passed away with
RA/Pulmonary Fibrosis 6 weeks after my daughter died and my sister died of kidney failure 2 weeks after my daughter died. The doctor told my daughter with a negative ANA she had no need to worry. Well, guess what I am worried. Negative ANA , does that mean anything, or am I just reacting way to quickly to this. I truly need some input to know how to approach this doctor to get a referral for her to see a speacialist. Oh, the doctor already knows the family history, but does not seem to be concerned. Thank You.

MARYCAIN
10-25-2006, 06:27 PM
From the cruelty of these diseases, so I certainly understand your fear and concern for your surviving daughter. I am so sorry for this losses coming one after another, it must have been almost endurable.

If your daughter has no other symptoms of lupus, it is possible she has primary Reynaud's Disease, which occurs by itself as an auto-immune disease, as opposed to the secondary Reynaud's syndrome that occurs with lupus, RA and sclerodermaa. In primary Reynaud's, the ANA is often negative.

One way doctors can tell the difference between primary and secondary Reynaud's is a simple test called nailfold capillaroscopy, where the doctor puts a drop of oil on the nailfolds (the skin at the base of the fingernail), then examines the nailfolds under a microscope or magnifier to look for problems in the tiny blood vessels (capillaries). If the capillaries are enlarged or malformed, it can indicate a connective tissue disease like lupus. If this test wasn't done, your daughter should certainly ask about, since it's one of the few diagnostic tests that doesn't cost anything.

Instead of pressing for a referral to a specialist, you might simply explain to the current doctor that you are very worried because of the family history, and to ease your mind, would he please do some additional tests. This approach makes it very difficult for him to refuse. There are several blood and laboratory tests that would be helpful - a complete antibody subset panel, a sed rate, c-reactive protein, complete blood count with differential, C3/C4 complement levels, and complete urinalysis (not just the dipstick most doctors' offices use). These are all tests which can be abnormal in lupus.

I mention the complete antibody panel because many labs run the ANA test first - if it's negative, they stop there and don't test for other specific antibodies in the sample. Although ANA-negative lupus is rare, it does occur, but most ANA-negative lupus patients will have other antibodies that show up when the complete panel is done. Antibodies to double-stranded DNA are very specific to lupus.

If all these tests are normal, then it's less likely that your daughter has lupus, or if she does, the lupus is still in the very early stages. If any of the tests are abnormal, then you should certainly ask for a referal to a rheumatologist.

I just want to tell you again how much I feel for what you've been through. Our moderator, saysusie, also lost a daughter to lupus complications, and I'm sure she will have some insight and suggestions. She is away this week but will be back next week.

MARYCAIN
10-25-2006, 06:29 PM
I meant to say unendurable. Sorry for the error.

weddingbx2
10-25-2006, 06:49 PM
Thank you so very much for all of your information. You stepped up and just answered all the questions in my mind. I know I probably wasn't hitting on the points I meant to, but somehow you figured that out.
I am printing your information so I can give it to her when she returns to her doctor. I am sure it sounded like I was angry at the doctor. I truly am not, but it was such a long period before my other daughter was diagnosed the transplant team told me if she had only been diagnosed earlier she would have never gotten in the situation she did. I suppose I am questioning my own ability to go through this again. She is a very intelligent gal and I know since mom rattled her cage a bit, she will move away from the fear and into more control of her own body in regards to this. You know, it was alot of losses at one time, but since I was caring for all three at the same time, I am not sure that it shocked me at all.
My gal adored her grandad and my handicapped sister. The weeks prior to her passing, the lupus just went crazy from the stress of thinking of lossing them and she truly was tired of all the battles. She had told a friend that she just couldn't go on anymore here and wanted to go first. She stopped taking her meds about two weeks before and that pretty much took her away. It's okay now, I finally accepted that she was tired of trying to continue to live for us, and it was only fair for her to take control of her own fate. I will always adore her and will never consider her anything but near me in another universe waiting for us to join her.

MARYCAIN
10-25-2006, 07:29 PM
I just hope you are able to sleep a little easier tonight.


There's a poem I've loved ever since my mom died -

Say not in grief that she is no more
but say in thankfulness that she was
A death is not the extinguishing of a light,
but the putting out of the lamp
because the dawn has come.


God Bless!

weddingbx2
10-26-2006, 04:51 AM
Thank you Mary, I have copied your poem for her sisters also. I think the hardest thing for me has been to hear people refer to her as dead. I hate that word. I know they don't understand and I never say anything but, I feel each of them at times are just so very near to me and I know they have only passed into another universe. Sleep is something I have a major issue with and my doctor just put me on something to help. I have a hard time allowing myself to go back to those final days and sometimes even to good memories because the bad creeps in. I have learned to push those thoughts aside and to just keep busy. My daughter's little gal is with me and for that I am grateful. Lupus is such a horrible disease and I had never heard of it prior to it becoming a part of our lives. I feel so guilty at times because it was me that passed this on to my children. Well enough of this, but I am so grateful to have gotten some help in directing my daughter in the right direction through the kind person in this forum. My head just never seems to think clearly anymore.
Thank You.