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Old 12-12-2008, 04:34 PM   #1
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Unhappy Lupus? Am I just too scared?

Hi!

I am 18, and a month ago while I was going to my doctor for my routine check up I told him about a concern I had with my hair loss. He had a few tests done on my blood and asked me later to come back for more tests. When I went back he told me I was slightly positive for lupus. He said he would do another test to check that out. Something that was very strange and the nurse pointed out to me that day was that my blood was kind of clogged, which I believe is one of the symptoms of lupus. (correct me if I'm wrong) I went back later to hear about my results and my doctor was not there, but the main doctor in the clinic I go to was there and I saw her. She said everything was fine and we could follow up with that next year make sure it hasnt worsened. She said there was really nothing that could be treated right now. I felt as if she was just trying to hurry up and ignoring my concerns. So I went home, happy because it looked like the lupus was not really there.

Lately, Ive been getting constant nose bleeds. I could say probably at least once a day.

I really hate to be so obsessed with this, but I think this is serious. I think I read somewhere around here about someone else who was having nose bleeds.

I just want someones opinion, I guess I am pretty scared with this since I've been a healthy girl for most of my life.


Even if my condition is not so serious .. should I be medicated? With my symptoms .. would I have a serious case of lupus? and for all of you living with lupus ... is it hard? Scary?

I need help!

 
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Old 12-12-2008, 05:23 PM   #2
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Re: Lupus? Am I just too scared?

Hi & welcome. I'll keep this quick, because I just want to point you to a few things you can read. I hope you'll post more soon.

There are three "sticky posts" (permanent info posts) at the top of the thread list. One has the Am. College of Rheumatology criteria for diagnosing & classifying systemic lupus (SLE). You generally must meet at least 4* of the 11, but not necessarily all at once. (*And there are lesser forms, called "subsets", for which you may meet fewer than 4 criteria.)

You'll see that only some of these criteria are tests. There really is no single test for lupus, actually. Only TWO autoantibodies are considered VERY specific to lupus, anti-ds-DNA and anti-Sm; but there are at least 14 or more other antibodies/substances also seen in lupus (like anti-Ro, anti-La, anti-RNP, RF, antihistone, ETC.) FYI, in his hardcover, which is available in most libraries, Dr. Daniel Wallace covers these concepts at great length, in patient-friendly language. Also look for Dr. Robert Lahita, another helpful author.

Another "sticky post" discusses antiphospholipid syndrome (APS), a blood clotting disorder that is implicated in blood clots, headaches, nosebleeds, etc. APS is seen in some lupus patients, but people sometimes have APS "standalone", without lupus. FYI, Dr. Wallace also covers APS in the hardcover I mentioned.

And you could ask for copies of all your bloodwork, to see for what thing/things you tested positive.

No prudent doctor treats a patient for lupus until SURE the patient has it. On the other hand, my own experience was that my local doctors, including multiple specialists, didn't recognize the variant kind I have. So I think your goals should be to read and to ask questions, and to make sure your main doctor is a Board-certified RHEUMATOLOGIST.

I hope something above is useful. I hope you keep posting here & that others chip in soon. Bye for now, with best wishes, Vee

Last edited by VeeJ; 12-12-2008 at 07:44 PM. Reason: added sentence

 
Old 12-17-2008, 08:51 AM   #3
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Re: Lupus? Am I just too scared?

Vivi09, Are you OK? Have you made any progress toward better understanding? Gotten answers about medications that may be warranted? Sending best wishes, V.

 
Old 12-17-2008, 09:38 PM   #4
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Re: Lupus? Am I just too scared?

Hello,

Recently I had a sudden onset of numbness in my left lower extremity. So I went to the Dr. and immediately sent for an MRI of my lumbar spine. Which consequently was normal. My Dr. referred me to a neurologist who sent me for labwork. The labwork showed many abnormalities such as postitive ANA titer of 640 speckled, iron deficiency, vitamin D deficiency & B12 deficiency and borderline hypothyroid.

I then underwent an EMG nerve conduction study for the numbness in my leg which was normal. Then after taking 4wks of vitamins I was sent for repeat labwork which, revealed even lower vitamin levels.

My Dr. is very concerned and has diagnosed me with Lupus and is not ruling out MS until I have an MRI of my brain & thoracic spine. My mother has Lupus and her mother had Lupus so the odds are against me. I have an appt. with a Rheumatoid in a couple days.

I just wondered if you know anything more. I do not know much about the disease. I just hope that my MRI shows no lesions. I fear MS. My mothers cousin suffers with MS and it is very debilitating.

Any advise would be greatly appreciated.

TAKE CARE

 
Old 12-30-2008, 08:04 AM   #5
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Re: Lupus? Am I just too scared?

There are many explanations to why you could have numbness, both medically and just plain simple reasons. Weight, clothing (tightness) sitting too much or not getting enough exercise, salt intake (are you swollen?)! You are in Pennsylvania where it is colder, the veins constrict, which could cause your numbness too! I have had Lupus for 30 years, and have gone through 2 kidney transplants and yes, I have gone through almost every test they have (so much it is now almost IMPOSSIBLE to get blood for a blood test now!) Check basic things first, recall what you have been eating, and take multivitamins!

 
Old 12-31-2008, 03:06 PM   #6
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Re: Lupus? Am I just too scared?

Aries, I think anemia is one possible cause of numbness and tingling. There are various causes of anemia, lupus & similar inflammatory conditions being only one, I think. FYI, vitamins didn't help my low blood levels; but identification and treatment of the underlying condition (lupus) DID help.

Dr. Daniel Wallace covers anemia---& just about everything else you could think to ask---in his excellent lupus hardcover, which you can find in libraries & bookstores. He also covers hypothyroidism, which can co-exist with lupus. FYI, Dr. Robert Lahita is another reputable author.

Hang in there! I was surprised at how much I improved on medication. So here's hoping that you get accurate answers & the appropriate help soon. Sincerely, Vee

Last edited by VeeJ; 12-31-2008 at 03:10 PM. Reason: spelling

 
Old 01-01-2009, 07:24 PM   #7
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ARIES18 HB User
Re: Lupus? Am I just too scared?

Thank you for your advice. I will definitely purchase the book you mentioned.

Happy New Year!!
ARIES18

 
Old 01-01-2009, 08:49 PM   #8
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Re: Lupus? Am I just too scared?

My mother has Lupus. Her mother had Lupus and died from kidney failure due to the Lupus. So, there is a strong hereditary gene. I see a Rheumatoid on Jan. 7th, the same Rheumatoid that my mother currently sees. I have alot of vitamin deficiencies B12, Vit. D & Iron and my Iron storage is very low. I was told I might possibly have a GI absorbency issue of some sort. I have lab work done often and despite the use of oral vitamins (B12, iron & Vit.D) my levels are dropping significantly. My eyes have been twitching alot. I have been very fatigued. I have a signifcant change in my bowels (loose stools), heart palpatations, hot sensations in my left foot and increased headaches. I was tested for diabetes because my father has diabetes as well as my grandmother and my testing was 84 fasting and 84 2hrs after eating.

Who knows, I have been under the care of a neurologist, PCP, pain specialist and soon a rheumatoid. Hopefully, the rheumatoid can shed so light as to what my true diagnosis is.

TAKE CARE,
ARIES 18

 
Old 01-02-2009, 06:55 AM   #9
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Re: Lupus? Am I just too scared?

Aries, I also had chronic GI malabsorption, for 20+ years . None of my local drs. (including at least 5 gastroenterologists over the years) seemed to have suspected anything outside of some undefined GI-specific problem. (I had multiple invasive tests that ruled out inflammatory bowel disease.) In contrast, my big-city specialists right away suspected the GI problems could be lupus-related. And because my longstanding problems resolved very rapidly once I started Plaquenil?---gee, I'd concur! Anyway, I hope your appt. goes well. Here's to better days soon for you! Warm wishes, Vee

 
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