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mvsmom
01-28-2005, 05:51 AM
Hi everyone -

[I just posted to a ProHealth lupus board so I apologize if there is overlap in membership]. I am 35 living outside of DC. Over the holidays I experienced vision loss in my right eye. It turned out to be a central retinal vein occlusion - a stroke in the eye. I was rushed to my doctor's office for blood testing - they took 10 vials on 12/28, with lupus being the lead candidate. It took them 3 weeks to get back to me saying everything was negative, but the blood techs forgot to take a vial for lupus (the lupus anticoagulant) because they thought it was the diagnosis. So a week ago I went back in to give more blood, had a call 2 days ago that the specimen had been mishandled and I needed to come back in. So a month later I am still waiting.

I have been tested for lupus twice in the last 3.5 years - my daughter had to be delivered early by emergency c-section due to a clogged umbilical cord; and then a little over a year ago I had a swollen face and rash and was tested for lupus (and ANA); anyhow, tests were negative.

When I read about lupus 3 weeks ago, the joint pain did not ring any bell whatsoever and suddenly a few hours later I could barely walk and have been feeling achy ever since (honestly, I would love to find out it is psychosomatic). I gave up caffeine cold turkey when this happened (my caffeine consumption was extremely high), so the fact that I feel fatigued and am retaining water, even the joint pains ... well, I presume the caffeine withdrawal could explain it.

My primary question is ... wouldn't SOMETHING show up in all of these other blood tests they ran if I had lupus? [If anyone knows what this means, the list includes CBC, hemoglobin AIC, SMA-23, factor V leidene, protein C-S, prothrombin mutation, AT-III, homocystene, anticardiolipid antibody, ESR.]

In any case, they think the retinal vein occlusion is a very, very serious bellweather and even if everything is negative, they're sending me to a hematologist and a rheumatologist.

Thank you, I would really appreciate any thoughts or insights at all.

Melissa

carlau
01-28-2005, 10:56 PM
hey there
sounds like you are really going through the wringer. ouch.
the whole dignosing lupus with a blood test is almost a useless exercise, as they can get a false positive test OR a flasse negative. meaning it can come up positive ANA (antibodies) and yo don't have any lupus symptoms or it can come up negative and you *do* have them.

maybe that's why so many rheumatologists are weenies. they ahve to deal with such a difficult disease to diagnose and treat, and there's no "cure" or end to it like there is say a broken arm the flu or childbirth. it just keeps going along, uncured and they feel kind of like failures for not being able to "fix" us.

anyway... i'm rambling. the way tehy diagnose is if you ahve 4 or more of the 11 or so "classic" symptoms.

lupus can attack any organ, from skin to heart to lungs and often teh kidneys and becaus inflammation goes systemic, also the brain, which can cuase strokes. i had 2 mini strokes in 2002. i'm doing really well now, after a long fight and lots of alternative medicine. as well as chemo and prednisone and 8 other drugs (!)

anyway thought you might be interested to know i had a LOT of vision problems after the stroke- blurred vision, streaks, spots, extreme nearsightedness, itchy eyes, dry eyes, crossing eyes- tha was out of control! but only lasted a coupel days. and they resolved over time. i amde sure not to buy any prescription glasses during that time because my vision was different every single day. so it is possible to improve.
but i do think some treatment is required and i do encourage ou to complement the mainstream stuff with some alternative stuff. acupucnture, once i got a therapist who talkas and listens to me and treas the whole me, has been really good for me, as has bodytalk.

mainstram medicine is best at crisis and diagnosis. but the drugs for lupus are so strong i have to go to alternative medicine to get back the quality of life after all the drugs!
with love~
Carla

mvsmom
01-29-2005, 05:53 PM
Hi Carla - Thanks for the reply. I called my doctor's office today after a tough night last night (swollen gums, stiff joints, overall swelling) and hours later as I was out running an errand they left a message totally blowing me off saying "the doctor says your tests came back negative and you should follow up with your retinal doctor. Have a nice day". (I really appreciated the "have a nice day". Ugh.

BUT I don't actually think the lupus anticoagulant test is back yet.

AND the retinal doctor said that even if every single test was negative, he wanted me to see a hematologist and/or rheumatologist. (And he had sent this primary care doctor a letter to this effect).

So I guess they've written me off as a head case - and it's hard not to feel like one with all of this crazy stuff going on. Changing doctors on Monday.

Thanks for sharing your story and letting me vent a little bit.

Hugs,
Melissa

carlau
01-29-2005, 07:11 PM
go ahead and vent! that's what the chat room is for right?? 'cause we've all been through it.

sounds like a hematologist might eb able to shed some light. i was impressed with the guy i was going to when i ws anemic. seemed very smart, very thorough. they got me back to normal with procrit shots.

Saysusie
01-31-2005, 05:29 PM
HI mVSMOM: Systemic lupus erythematosus is a disease which can involve every organ in the human body. It is no surprise, therefore, that it can involve not only the eyes but also the orbit (eye socket) around the eyes and the eyelids that house them. It may even involve the nerve connections from the eye to the brain. Lupus can produce inflammatory lesions (or sores) of the eyelids. The lesions may be small and individual ("discoid") or they may b more widespread causing swelling, irritation and redness of the eyelids, and sometimes loss of the eyelashes. Over time these lesion, if untreated, may cause scarring which can distort the eyelids and prevent them from performing their function of blinking and wiping the front of the eye. Treatment usually consists of systemic (taken internally) or topical (applied locally) corticosteroids to decrease inflammation.
The conjunctiva may also become inflamed causing redness and tearing, although this does not occur often. The tear glands are located in the conjunctiva. When lupus affects the conjunctiva, causing inflammation and scarring, it may reduce tear production resulting in dryness of the eye (which is often associated with mouth and vaginal dryness and is known as sicca or Sjogren's Syndrome). With reduced wetting, the cornea can lose its clarity and become roughened and irritable as well as prone to infection (ulcers). Rarely inflammation of the sclera or iris may also occur. Again systemic or topical (eye drops in this case) corticosteroids are used to reduce the inflammation. In addition artificial tear preparations and ointments can be used to reduce the dryness and subsequent irritation. Infection or ulcers of the cornea require prompt and careful treatment with antibiotics. By far the most common effect of systemic lupus erythematostis on the eye is injury to the blood vessels that supply the retina. Small retinal hemorrhages can result, as well as occlusions or blockages of the smaller retinal blood vessels. This causes damage to the retinal tissue due to lack of an adequate blood supply. Infrequently, larger arteries may also be occluded leading to loss of function in large areas of the retina. When this involves the center of the retina, known as the macula, a large area of central vision is lost. The optic nerve may also suffer from blockages of the blood vessels which supply it, resulting in loss of vision in the entire eye.

In rare cases the blockages of blood vessels in the retina may be so severe and widespread that the retina may, in response to the blockages, attempt to develop new vessels. This process is termed "neovascularization." Such new vessels grow abnormally out from the surface of the retina into the central vitreous gel (the substance that fills the inside of the eye). They are prone to bleeding when stretched or pulled by the gel, resulting in severe vision loss. Although these abnormal blood vessels are rare in patients who are on adequate treatment for lupus, all lupus patients should be followed with periodic eye examinations because the blockages and abnormal vessel growth may occur without the patient noticing symptoms. If blockages or neovascularization are detected early, they may be treated with a laser. This procedure is usually done as an outpatient. Involvement of the central nervous system is uncommon but, when it occurs, may be due to blood vessel inflammation and blockage within the brain. The resulting damage may affect the visual system in a variety of ways. These include defects or gray areas of the visual field in one or both eyes, eye movement abnormalities which can lead to double vision, disturbances in the function of the pupils, and damage to the optic nerve leading to loss of vision in one eye.


Treatments for reducing the systemic inflammation of lupus (inflammation which can affect any area of the body) are vitally important to the well-being of the patient and also lessen the effect of inflammation on the eye, eyelids, or orbit. Some of the drugs which are used in the treatment of systemic lupus, however, can have side effects on the eyes. The long-term use of steroids, either systemic or topical, may cause the formation of cataracts. A cataract is a change in the lens of the eye which can affect the ability of the lens to focus. It can produce opacities or defects that create glare and haziness of vision. Most mild cataracts are treated with corrective eyeglasses or special lens filters. When the glare or haziness become such a problem that patients can no longer see well enough to go about their daily lives, then the lens with the cataract can be removed surgically and replaced with an artificial lens which restores the vision.

In addition, corticosteroids can lead to the development of' glaucoma, a condition in which an increase in the pressure within the eye causes damage to the optic nerve and an irreversible loss of' vision. This condition can be treated with medications to lower the pressure within the eye, therefore preventing further damage to the optic nerve. Periodic eye examinations are vital to the early detection and treatment of glaucoma.

The use of antimalarials has become widespread in the treatment of lupus patients. One of the first of these, chloroquine, was found to have a significant toxic effect on the eye. Over the years the drug has a tendency to accumulate in the layer between the retina and the sclera, and in some cases this leads to severe destruction of the central retina with central vision loss. A drug similar to chloroquine is more commonly used today. It is called hydroxychloroquine (Plaquenil). This drug is apparently not as toxic and vision loss is extremely rare, even with relatively high doses taken over several years. Lupus patients who are on Plaquenil are still checked carefully with periodic vision and field testing and evaluation of the retina. If toxic side effects to the retina do occur, they are detected early, and the drug can be stopped without any further retinal damage and no injury to vision.
This is such a difficult disease for all of us to live with and it affects so many different parts of our bodies in so many different ways. I wish you the best of luck. I think that your doctor was right to refer you to a rheumatologist...they are much more able to deal with Lupus and its symptoms!!
Peace and Blessings
Saysusie

Angie
02-24-2005, 08:17 PM
It's a little late, I guess to be reading this, but did you find out about your Lupus Anticoagulant test ? I have antiphospholipid antibody syndrome, and honey it's not to be played with. I'm not sure of your age, but docs don't normally look for it in younger individuals. I was 25, and lost a baby at 7 months due to the same umbelical cord clot. Even then, my doc said it was a ' freak ' thing. Only when I became pregnant again, a high risk doc tested me for the AAS . I have Lupus, but you don't have to have it to have this clotting factor. I am now on coumadin for this, and am closely monitored. If you have any Q's feel free to e-mail me.

Good Luck!
Angie

cornwellmb
04-25-2005, 07:21 PM
This sounds so familiar. . .what is worst for me is living with the fact that my vision is not guaranteed from day to day. Those veins in the other eye could go at any time, and then where will I be? I've signed up for a support group for the low vision, but need to keep getting lupus support onine, because our town has no in-person group. I've thought about starting one while I can still see well enough to do so. . .just another thing on my to-do-while-I-still-have-eyes list. Take care and hang in there, Melinda