My 18 year old daughter has been quite ill for over a year now...here is the Reader's Digest version of her story.
Up until April 2006 Hilary was a very healthy, fit young woman. In April 2006 she suddenly lost her balance. She became quite nauseous and developed a nasty headache. The vomitting continued for about 3 days until we took her to a clinic and were given Gravol suppositories. She was diagnosed with a virus. Once she started holding down fluids and regaining her strength, we noticed that she had extreme difficulty walking or even standing. She was admitted to an excellent children's hospital (we are in Toronto, Canada) and they ran a lot of tests. They did not find anything of any significance so stuck with the diagnosis of a virus. She was given exercises by the physiotherapist and that was about it. At about this time I noticed that her lips would turn quite blue. She also commented that her finger and toenail beds would turn blue and her hands and feet would go numb. After about 3 months Hilary's balance returned. Not as good as prior to the event, but good enough to hold down a summer job. She was an attendant at an outdoor pool. That summer was extrememly hot but Hilary consistently had to wear sweatpants and hoody to stay warm. She was able to go to school in the fall and aside from the occasional numbness did pretty well. During a very stressful situation, she experienced what has been described as a migraine-like headache. She was in such pain that I took her to Emergency and she was put on IV painkillers. The winter was hard on her...more than once her legs went numb up past her knees.
As an aside, Hilary was involved in a traumatic event a few years ago and in the spring of 2006 finally agreed to see a psychiatrist to help her with what appeared to us (her parents) as depression. She was prescribed a mild dose of Prozac. The first several weeks on Prozac were tough because it caused significant dizziness but she has been over that for some time now.
In late April she noticed vision problems. At first she thought her eyes were just blurry but then she started to notice a pattern. Her vision would get blurry from the outside in, often ending in total blindness for 45 seconds to a minute. In early May this was happening up to twice a day. Once she shared this with me I immediately informed our family Dr and the neurologist who had been working with her. The neurologist, who had an MRI of her neck performed, said he could see nothing wrong and basically told her that her problems were psychological. The family Dr was far more concerned and had her immediately stop taking Oral Contraceptives. Also in the spring she started to experience urinary urgency. When she has to go, she has to go and sometimes doesn't quite make it in time. Back in the fall, our family Dr referred Hilary to a well known Rheumatologist...we finally saw her this week. We found out (for the first time) that Hilary had an ANA of 1:160 in November 2006. She also discovered a swollen lymph node under one of Hilary's arms. She was quite concerned about the blueness and numbness and very concerned about the vision loss. What we forgot to tell her (I will phone Monday) is that back a few months ago, Hilary had an episode where, during a conversation, she suddenly could not speak. She knew in her mind what she wanted to say but she couldn't get the words out. This has happened only once. A bunch of bloodwork is being done, along with urinalysis. She has also ordered an MRI of Hilary's head. I have been doing some reading on Lupus, especially with respect to Migraine with aura. The risk of stroke really worries me especially since that incident where she couldn't speak properly sounds like an TIA.
What does your gut say to you about this story? Does it sound like Lupus? We won't hear anything about the test results for 3 weeks and I am very concerned because the vision loss is continuing. Does anyone have experience with this type of symptom or know more about the risk of stroke?

I have to confess...I am scared. Thanks for listening, and best wishes to you all!

First of all, I'm so sorry that your daughter is so ill, and I hope she gets good treatment and feels better soon. I am not a Dr. or a medical professional, only and SLE patient, so I can not make any sort of diagnosis, only share my experience with you. The summer before my diagnosis, I did experience brief periods of vision loss like your daughter is describing. At the time this was going on, I also noticed little redish purple streaks on my skin extending from the lash line on my lower eye lid down to the top of my cheek. I began having trouble with my eyes being dry and irritated at about the same time. I also experience my fingers, toes/feet and nose, sometimes ears as well, changing colors and I have pain and tingling when this happens......My Dr. says it is Raynauds disease, which is common in people with Lupus. I have very bad headaches, and, after seeing a neurologist and being diagnosed with Lupus, was told that my headaches are caused by a certain lupus antibody that I have that can break the blood brain barrier and cause inflammation of the blood vessels in the brain resulting in horrible headaches. Once I began treatment for the Lupus, which included prednisone, the headaches greatly decreased in frequency. APS, anti-phospholipid-syndrome, occurs in a lot of people with Lupus. It can cause strokes etc.. It can be pretty well controlled with treatment. You may want to ask your daughters Dr. if she is testing for APS as well as Lupus, just to be sure. As for what my gut says, if she were my daughter, and had those symptoms and a positive ana....I would definitely persue testing for Lupus as well as Scleroderma and MS just to be certain. I say MS because of the numbness in the legs, MS and Lupus share a lot of similar symptoms, and both are autoimmune. Whatever you do, don't let this Dr. off of the hook until you have firm answers, your daughter is experiencing some scary stuff. Whether it winds up being Lupus, MS or scleroderma or something else, the sooner she begins treatment the better! I wish you both all of the best, take care :angel:

Hi -

I echo the sympathy that Hilary has had such worrisome stuff to deal with at her tender age.

I'll add that a sticky at the top of this thread has information on the APS that was mentioned above so you can read about it there. Another sticky is about lupus symptoms.

Since Hilary is having vision changes, has she seen an othamologist yet? Seems that's a doctor who should put his/her two cents worth in the mix.

I applaud your efforts to make sense of what is happening and to find a course of action that will help Hilary. If you find something that seems to fit Hilary's symptoms, copy/paste/print it, highlight the pertinent parts, and take it to Hilary's doctors (keep a copy in your records). I also suggest you ask for copies of all of Hilary's lab tests and keep them together in case any new doctor needs an overview (never give away your originals!).

Wishing Hilary - and all who love her - well! Barbara

Hilary's Mom,
Just wanted to let you know that I too am from Toronto, Canada and was diagnosed with SLE (lupus) in 1993 at the age of 22. I have seen several very good rheumies in the city so if you don't get answers from this one, please don't hesitate to ask for a consult with another. Lupus is a dreadful disorder however, with the right combination of medication and support, you can live a normal life :)

Here is a quick update - it has now been two weeks since Hilary saw the rheumatologist. We should hear results from the blood and urine work within the next week.
Hilary was doing quite well for the past couple of weeks; no vision problems, no numbness of hands or feet. Then late on Saturday she went to a pool party and was out in the late day sun for a while. I did not see her until the next morning and when I did it was pretty obvious that she had the malar "butterfly" rash across her cheeks and nose.
I phoned the rheumatologist's office to let them know about this. Along with her other symptoms, that could put her over the top with respect to the magic 4/11 list!
Hopefully we'll know something within the next week. At a minimum I'd like her to start treatment so that she doesn't have to go through another winter like the last one!
Best wishes to you all!

Hello,
I just wanted to let u know that i feel your daughters pain. I have gone through the the rashes and the vision thing and the numbness. i actually fell this morning (it was a funny story) because i couldnt feel my feet. but i am soo sorry that u have to go though this. My mom did the same thing you are right now. we went to three doctors this year because of my issues and they all just told me i was being a complaining teenager and i was fine. until my rashes got so bad my dermatologist got really worried and tested me for the 5th time in two years for lupus. i hope that your daughter doesnt have lupus and it is somthing else because its lupus is not fun but early detection is the best thing. dont let them tell u everything is fine. only you and your daughter know her body and if sumthing is not right follow your heart. i hope everything works out for you and let your daughter know she isnt alone! my best wishes for you and ur family
Danielle :angel:

It's "Mom" again.
After a month, all the test results are finally in. The problem is, either the Dr forgot to ask to have her checked for antiphospholipids, or the lab didn't do it...either way, more blood work is necessary.
What I do know is that Hilary's white count is "low" and her ANA is now 1:640 (was 1:160 in November).
The rheumatologist feels that her story is still inconclusive and wants to defer diagnosis until 1) the AP is done and 2) and MRI of her head is performed. She does not want to jump in and start a course of prednisone without more data.
I told the rheumatologist that I had been doing some reading on migraine and vision loss and was concerned about Hilary and stroke. She said "I am very concerned too." While I am happy that she is taking all of this seriously, it's not exactly what I wanted to hear!
We are headed on a nice little vacation to California in a few days so I asked if there was any concern about her flying. She wants Hilary to take a baby Aspirin before flying just to be on the safe side.
(By thw ay, Hilary is 19 now!)

Does all this make sense to you folks? Can you think of any specific questions I should be asking?

Thanks for you help and best wishes to you all!

This may or may not help, when I was younger my dad had a heartattack, anyhow, he was put on the blood thinner coumadin. Every month or so he would go have a blood test called a pro-time. It measured how fast his blood would clot, and thus, enabled the Drs. to adjust the level of coumadin he took. Maybe you could ask for your daughter to have a blood test like the pro-time to see how fast her blood is clotting before you go on vacation. If I remeber correctly it only took 2-3 days to get the results back. If she is clotting very quickly, they may wish to up her dose of asprin or give her something else. Hope all goes well for you and your family and you are able to enjoy a much needed vacation to the fullest:)

Hi there mom,

The only thing is though that coumadin/warfarin will not be prescribed unless a definite case of a clotting disorder i.e APS or problem i.e. heart attack, blood clots or DVT has been diagnosed/has occurred. It is not normally given as a 'just in case' medication.

I have had APS for years and years and took aspirin which suited me along with all of my other heart medications, this helped with the blood flow to my heart and so on, and helped the APS to be under control. It worked until not so long ago when I had multiple blood clots in both of my lungs and a DVT in my leg. Then it was suggested that I take warfarin and I agreed.

Hope this helps Take care.

goldenwings :angel:

Please Help Me!!!! mY DAUGHTER IS ONLY 15 and has postitive ANA of 1:2560! Speckeled and Nucleolar. Positive SSA and positive SSb, Anti Ro and Anti La. All other tests for (SM,Dsdna, RNP, etc) were negative. She is allredy losing hair and more recently eyelashes. THere is a blue ashen palor to her skin. She just got ill in February of this year. It is onlyApril! What is going on??? Please pray for her.

I'm so sorry that your 15-year old daughter is having these problems. Is her doctor a rheumatologist? Did her doctor(s) give her a formal diagnosis (one or more)? Is she being treated with medication? Was she told to avoid sun? Did her doctor check all her major organ systems (heart, lung, kidneys, etc.) & send her to any OTHER specialist(s)?

From what I was told by my doctors and have read [see next paragraph], anti-Ro is associated with systemic lupus (SLE, which is the kind we think of when we hear the word), but also with a typically milder "subset" called subacute cutaneous lupus (SCLE). And anti-Ro is ALSO associated with Sjogren's syndrome. FYI, people may have lupus or Sjogren's---or both.

TO READ MORE: There are comprehensive lupus hardcovers in most libraries & bookstores, written for patients & families. One author is Dr. Daniel Wallace; another is Dr. Robert Lahita. I think either (or both!) could be a valuable resource for you. I hope you post more as soon as you find the time. Thinking of you both, best wishes, Vee

(P.S. I was positive for anti-Ro and was finally Dx'ed with SCLE, after many decades of up's and down's that included a recurring rash that is seen ONLY in lupus. Plaquenil has helped tremendously. People with anti-Ro are very often horribly photosensitive, so I have to be VERY careful about sun.)

I second the motion to have your daughter tested for antiphospholipid syndrome. I was disappointed to read that this test was not done the first time around, especially with several of the symptoms your daughter has mentioned.

It's just a simple bloodtest, and such a common disorder, yet many doctors do not think to run this test. Sadly, the medical community is truly failing somewhere, with regard to diagnosing this disorder early on.