View Full Version : The state of waiting!

11-22-2011, 10:27 PM
Hi there. I am a 31 year old Caucasian female.
I always have thought I was in good health with a few hiccoughs here and there.
In August 2011 I rapidly lost the vision in my left eye. Because of speed of the deterioration my doctors thought it was for sure neurological. After a week in the hospital I ended up with a diagnosis of Age Related Macular Degeneration. Remember, I'm 31. The best doctor in the city I lived in didn't seem too worried about this diagnosis that didn't seem to fit. Research began immediately and we found the best retinal specialist in the world. I went to the Cleveland Clinic and met with him. Basically he told me we may never know the cause, but we started treatments to stop the vessel growth and bleeding around the optic nerve.
I go to Ohio once a month for treatments. Last month on my visit my right eye had severe inflammation and the process was starting over. Needless to say I began to get worried. I can live an easy life with one operating eye, but two... That's a different story.
My doctor told me we need to bring in some more specialists because this obviously is the beginning of what happened in my left eye. Well, how does this tie in to lupus? He mentioned that it could be the underlying cause of why my eyes are doing this.
Next week I return to Cleveland to meet with an inflammation specialist along with an infectious disease doctor to begin the "process of elimination".
After looking up details about lupus, I see other signs that possibly could fit.
Joint pain
Memory lapse
Light sensitivity
Chest pains, etc
GI problems...
But when they mention issues of the eyes it seems rare. Or there just isn't enough information that I can come accross.
Have any of you dealt with uveitis? Or problems with your eyes?
Can you have lupus and never have a the "butterfly" rash or other skin issues?
Any advice would be great. I know I'm not diagnosed with Lupus, but I am curious as to what my future may hold.
I appreciate your forum and the wonderful group of people on here.
Best wishes,

11-22-2011, 11:52 PM

i was just diagnosed with lupus yesterday. i never received a rash before. i do have hip, knee, leg and feet pain. i also have blurry vision. i hope this helps you somewhat. my chest doesn't hurt much but i do have asthma too.

11-23-2011, 12:40 AM
Welcome to WHL, I have eye issues also, they thought they were related to the medicine . But not so. Still trying to figure it out. If IOU read the threads and stickies especially you will both find a lot of info.


11-23-2011, 06:11 AM
Hi there. ....Can you have lupus and never have a the "butterfly" rash or other skin issues?
... Lauren

hi lauren and welcome.
yes lupus does effect different people in different ways.
that is one of the main stumbling blocks for doctors, there is no standard, applies to everyone, symptoms.
most people can have 1 thing, but it does not have to apply to everyone.

i hope you have success with the diagnosis. many of us have had a long road to getting a positive diagnosis, but some have been lucky to have it sorted out quickly.
unfortunatelly it can take quite a lot of blood samples and poking, prodding.

11-23-2011, 06:13 AM
i was just diagnosed with lupus yesterday.

welcome trust me,
glad to see you have fitted in, and started adding your experiences to our threads.

11-23-2011, 08:34 AM
Hello and welcome to our family. I am so sorry to hear about the issues with your eyes and I do hope that you find answers and treatment very soon so that both eyes do not become affected.
YES, it is entirely possible to have Lupus without the butterfly rash. There are many who never developed the rash. There are eleven (sometimes fourteen) criteria for diagnosing Lupus. You need only to have four of those criteria (see sticky for more detailed information) and there is no rule that says the butterfly rash has to be one of those four.
I have not heard of many cases with your eye issues, but since Lupus is a disease that affects every single part of the body (blood, skin, muscles, nervous system, arteries, skeletal, follical, organs, etc.), it is quite possible that it may be the underlying cause of your issues. Especially given the fact that Lupus can cause severe inflammation in each part of the body that it affects.
I am glad to hear that you have doctors who are working diligently at the "process of elimination" so that an answer can be found and treatment can be started. I wish you the very best :-)

Peace and Blessings

11-23-2011, 12:00 PM
Hi there!

I am sorry you're dealing with all this - it sounds really scary. But thank goodness you have such great doctors!!! They sounds determined to get to the root of things - good reason to be optimistic. :)

I am chiming in here because eye problems are how I got diagnosed with lupus...

This has all just happened in the last 4 months, so I am very new to all this and don't have the wisdom that other folks here have, but I guess I can offer you some fellowship. My eye issues are different, and not nearly as bad as what you seem to be dealing with, but they're scary nonetheless. Anything that affects your vision is frightening, for sure.

So here's what happened...over the summer, my eyes kept feeling "weird". Not a very specific term, right? But I couldn't define it. They just felt strange. I never paid much attention to it because it wasn't PAINFUL, and hadn't affected my vision (yet).

Then one day I woke up and it looked like I had a big brown thread draped through my field of vision in my left eye - it went most of the way across. There were also a couple of other "floaty" things....I had some "floaters" a couple of years ago so I assumed this was similar but worse. Coincidentally, I had my annual eye exam just two days later, so I waited for that.

When I went in, the eye doc could see that it was NOT a "floater" - he could see something was wrong but could not tell what it was. So he sent me to a "Retina Specialist" - took me 3 weeks to get in. The Retina Specialist did about a thousand tests and said it was a "vascular event" - basically a little stroke in my eye. she could not figure out why - said it was very strange for somebody my age who was pretty much healthy. At the very end of the appointment, she was still scratching her head in confusion, and she said "And you haven't ever had any weird bloodwork?"

Well 20 years ago when my husband and I had blood tests to get our marriage certificate, my syphillis test came back false-positive - it wasn't syphillis, but it turned out to be Antiphosphilipid Syndrome (APS). At that time, nobody knew much about APS so they just told me I had it (and will test false positive for syphillis, lyme's disease, and some other stuff), and that I might have a higher miscarriage risk at some point. I filed that away and never really thought about it again...until the eye doctor brought it up.

When I told her, she was all upset...she said that it was absolutely what caused the eye thing, asked me a bunch of other questions about symptoms (none of which I ever thought were related), and said it was really critical that I get to a Rheumatologist immediately. She actually really freaked me out.

SO - I went to the Rheum and did a zillion blood tests, an ultrasound of my hands (which are always painful), a back x-ray (I've had S-I joint issues on-and-off for 2-3 years), urine tests, and a head-and-neck MRI. I walked out with diagnoses of Lupus, Sjogren's, and APS (and in my followup yesterday he also diagnosed Raynaud's in my feet, which my GP had speculated about before).

The good news is that they eye is healing, and now I am on Plaquenil and one aspirin a day, which we're hoping will prevent future episodes. If not, I will have to go on something stronger, and maybe some vaso-dialators and/or blood-thinners. Apparently the Lupus and APS can sort of gang up on your eyes.

I am grateful to the eye doc for catching all this - without my Rheum and monitoring.testing on a regular basis, I probably would have gotten much sicker - possibly had a stroke or DVT or lost toes/fingers or maybe my vision to this rotten stuff. Now I can work with my Rheum and my eye doc to make sure things don't get worse than they absolutely have to.

So yeah - every story is unique, of course, and I really hope you DON'T have Lupus (or Sjogren's, or APS, or anything else!!!!) - but it absolutely CAN attack the eyes.

It's been a very weird whirlwind of a few months for me, adjusting to all this. But then when I think back through my health history, it all makes more sense...and I'm a little p*ssed that my regular doc didn't catch things earlier - because the signs were definitely there for years before this great eye doc tuned in and caught what was going on.

Best of luck to you on your journey...let us know how things turn out!!!!

11-23-2011, 09:49 PM
Welcome to WHS.
Others have already given you some great advice. Many of us who have Sjogrens in our diagnosis battle dry eyes.
You are lucky to have a great team of docs.
Good luck to you.

11-24-2011, 01:43 PM

My lupus totally effects my eyes. For years (about 12 to be exact) I was told everything from pink eye, infections, allergies to that I must be putting my finger in my eye! It wasn't until I was dx with Lupus that they realized that it was Lupus that was causing my eye problems. For me, Lupus attacks the lining of the eyes-all the tissues around and behind the eye swells. My eye lids swell too to the point that they look like it will burst. The eyeballs themselves will be completely blood shot. Yeah, its really pretty--NOT! I haven't had too many vision problems-yet-thankfully. Just blurry and feels like there is sand in them sometimes.

I saw my Rheumy on Friday last week and my family doc this morning. They are setting up an appointment for another eye doc soon. I just finished 6 months of intravenous methylprednisolone and I'm still on azathioprine (imuran) and they just added another drug for pain. While this last treatment has worked to keep my lupus somewhat under control it didn't help for the eyes. I have been given eye drops before that are basically an advil for the eye that help a bit. My Rheumy and family doc want the eye doc to give me something else to help control the swelling--we'll see what happens.

Good luck to you. I hope you find something that works. Keep us posted, its always good to hear how others are dealing with the same symptoms.
Take care.