Please help me, I'm terrified. :(

[Nanerpus]

I'm a 26 year old woman who has had dry eyes for several years now. At first, my eye doctor told me I had a pinquecula (area of sun damage) in each eye that was causing rubbing and inflammation. Over the last 6 years I have been in a few times (4?) for redness that would not go away and during that time he also said I have Dry Eyes, which makes the pinguecula worse and more easily irritated.

Fast forward to last week, my eye was red over that area and they both were a bit irritated, so I went in and my doctor said that since I had been in several times, he wanted to run some blood tests to check for autoimmune diseases. The diagnosis was episcleritis.

My results came back, and here are the results: CBC: Normal, SED rate: Normal, Rheumatoid Factor: Negative, so that was good, but my ANA result was a "weak positive, speckled and 80."

I'm terrified I have scleroderma or connective tissue disorder or lupus. Autoimmune diseases run in my Dad's family, and I have had Raynaud's syndrome since I was very young. I have also had a random acute attack of pancreatitis 3 years ago, have occasional itchiness, and hormonal issues during my cycle. I have also been EXTREMELY anxious and stressed this entire year.

I am dreadfully afraid that I have an autoimmune disease that will cause me to lose my eyesight.

I have an appointment with a eye doctor who specializes in eye manifestations of autoimmune diseases for next month.

So far, my eyes have been fine, eyesight fine, according to my local eye doctor aside from the episcleritis.

I'm so so so terrified of going blind.


Any insight is very greatly appreciated, I am seriously paralyzed with fear over this right now.

Best Wishes to you all.

[tearless2]

You sound similar to me. I am a 36 year old female and last December, one night I took out my contacts and my eyes felt a little dry. Then over the next few weeks they appeared to get progressively drier and drier. At one point, they were so inflamed it hurt to put saline in them. The optometrist said they were aqueous deficient.

I also got autoimmune blood tests and they were the same as yours. All negative excpet an ANA speckled 1:80. My PCP said it was nothing but I insisted on going to a rheumatologist after reading up on sjogren's.

The rheumatologist said I probably had sjogren's based on my symptoms. I think I might have a dry mouth sometimes. I have no autoimmune issues in my family that I am aware of and no other diagnosed autoimmune related things. I was hoping that this eye thing was contact related or due to accutane I took 10 years ago.

I don't know what to think but I am scared too. I wanted to tell you that you are not alone. There are many helpful people here that will help. I have not heard of sjogren's causing blindness and I have done quite a bit of research on it.

Please keep us updated on your doctor's appointment and what he/she says.

Do you still have dry eye? What are you taking for it?

[willwork4tears]

a little advice

I know how you feel. I have severe dry eye, Sjogrens and Raynauds. You need to take a deep breath and do your very very best to try not to catastrophize (imagine every catastrophic possibility). It takes a while to diagnose these things properly. The average time from first symptom onset to diagnosis for Sjogrens patients is 8 years! I'm not saying you have Sjogrens or any other autoimmune disorder; I am saying autoimmune is tricky and it may take a while to get all the answers. Go to the doctors. Ask a lot of questions. Take things slowly. A diagnosis is not a death sentence. You WILL find ways to manage and improve regardless of any diagnosis.

Since you had a weakly positive ANA, you should consider getting a few more autoimmune blood tests. Specifically: SSA/Ro, SSB/La, anti-dsDNA and anti-RNP.

Hang around here for a while. There are a lot of very sick people with very good coping strategies and great advice.

And don't forget to BREATHE.

[Nanerpus]

Thanks for the responses guys The last few days have been very hard and I'm just feeling very nervous and anxious about everything. I have my appointment with the rheumatologist November 3rd, and in the meantime my opthalmologist has ordered a round of more specific tests like those mentioned to see if I can have more information to take with me to the Rheumatologist. I'm very nervous waiting for the results.

[Nanerpus]

Just an update, thank you again for all your replies and support.

I met with the Rheumatologist in Boston, he's the head of Rheumatology at Brigham and Women's. He examined my nails and did a thorough history and at that time really felt I have Primary Raynaud's and nothing autoimmune going on. He said that he wanted to re-run all the tests, including the ANA (which was the only one to come up weakly positive before).


I got a call from him a week later and everything had come back negative. It was his feeling I had either a false positive or a virus that made the ANA positive.

So, I'm quite relieved and feel better mentally. I was so worried before, even though besides my eyes feeling dry, I feel great (no aches and pains, great energy, etc.) As it is my eyes have been really itchy and red and I saw my eye doc and he believes in addition to an Aquaeous Deficiency, I also have allergies.

Thanks and best wishes to everybody again

[willwork4tears]

Great! I'm so glad you're feeling better and have a firm diagnosis now. Just knowing what's REALLY going on is more than half the battle.

Thanks for the update. PM me if you have any questions about Raynauds. I've had it for 14 years.

[tearless2]

That's great, congratulations! I was wondering, why did he examine your nails? What was he looking for?

[willwork4tears]

Raynauds causes poor circulation, which in turn, causes blue fingernails and toenails. Sometimes the skin on the fingers and toes can look blueish as well. My nails are pretty much denim blue all the time and the "moon" (the part at the nail bed) is huge. The size and color of the moon are good indicators of oxygenation.

[Nanerpus]

Raynauds causes poor circulation, which in turn, causes blue fingernails and toenails. Sometimes the skin on the fingers and toes can look blueish as well. My nails are pretty much denim blue all the time and the "moon" (the part at the nail bed) is huge. The size and color of the moon are good indicators of oxygenation.

Exactly. Also, by putting on a special oil and using a goggle/lens/light of some sort, he can look at the nailfold capillaries to see if they are normal or abnormal. Abnormal capillaries are thought by *some* doctors (he said it is not a completely solid indicator though) that the Raynaud's is secondary, which in my case would give us more information that I might have some sort of other disease going on. Because they were completely normal, it made a much bigger case that the Raynaud's was Primary - but it made sense before that test anyways since I had all the other Primary traits - not very severe, had it since I was very young (5 years old), etc.

Willwork4tears: Thank you and I might take you up on that!