Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need your opinions on my eye pain/photosensitivity

Yikes Deb, good luck with the surgery. That sounds serious. And painful! I hope your recovery is a quick one.
I will try to get my probs investigated... I see the ophtho again on wednesday. Wish me luck!

Hi Jan - I'm trying! lol It's really not for lack of trying, that I haven't been able to figure it out yet.
The ophtho I see gets fantastic ratings. He's supposed to be one of the best here... I just need to get the guy to believe me. And I'm still really angry that he didn't bother to tell me that my referral to the neuro-ophtho was denied... until my GP's office investigated it 3 months later. I would not recommend this guy at all... but who knows... maybe he'll be better on wednesday.
Will keep you posted.

Hey, Megan! Sorry to hear the eye issues are unending.

I also suffer eye complications with my case of spondy. I often try to describe it as two evil chipmunks running around in my stomach, sinuses, lymph nodes, and head. I'm sure that they're trying to push my eyes out! It makes me very nauseated and light sensitive. This usually combines with the crushing spondy pain running down the base of my skull into one of my shoulder blades.

One thing I notice that helps this is eating lots of cabbage, brussel sprouts, sauerkraut. When I notice myself losing peripheral vision and squinting at the light, I eat a big helping of these veg. Broccoli and cauliflower too. I think it may be the sulfur content.

I also think it might not hurt to get a psychiatrist on your side. If anything, you could approach them for helping you emotionally deal with the pain. Send them to this message board, and we'll straighten them out. 5 minutes in a room of spondys will explain it all.

Megan - suggest that you get a Shirmer's test done. Am aghast that your opthomologist has not done this test. Dry eye can lead to cicatrices on the surface of the eye - must be treated. Eye drops and special eye washes: preservative free and in single dose dispencers. LacriLube at night (which last you are using).

http://www.scleroderma.org/medical/sjogrens_articles/sjogrens101.shtm

Sjögren's Syndrome (Show-grens) is an autoimmune disease characterized by malfunction of the tear and ... This condition is not diagnosed by a blood test. ...
www.scleroderma.org/medical/sjogrens_articles/sjogren...

Sjögren’s Syndrome (Show-grens) is an autoimmune disease characterized by malfunction of the tear and saliva-producing glands and the mucous secreting glands of the vagina. The result is the feeling of dryness of the eyes, mouth, and vagina. Sjögren’s Syndrome may be primary (occurring alone, not associated with other diseases), or secondary (occurring in patients who have another autoimmune disease such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma). Over 20% of systemic sclerosis patients have Sjögren’s Syndrome, which occurs most commonly in those with limited skin thickening (old term CREST syndrome).

CAUSES

Sjögren’s Syndrome is caused by accumulation of lymphocytes in affected glands and the ducts which drain these glands. Lymphocytes are normally found in the blood stream, lymph nodes, spleen and bone marrow. Their appearance in glandular tissues is abnormal, signifying that organization of the immune system has become faulty. When they are present in glandular tissues, lymphocytes interfere with the production and flow of tears, saliva, and vaginal secretions.

Eye Tests
The Schirmer test is a screening method to measure how much you are able to wet a strip of filter paper placed inside your lower eyelid. If the paper is wet less than 10 millimeters in five minutes after placement, it is considered a positive test. Reduced tearing should be confirmed by an ophthalmologist, who can perform additional more sophisticated tests and look for other causes of dry eye.

Mouth Tests
A biopsy of the inside of the lower lip may support the diagnosis. In Sjögren’s Syndrome, a greatly increased number of lymphocytes is seen surrounding the small saliva-producing glands. Injection of dye into the parotid duct (sialogram) can demonstrate characteristic enlargement (dilatation) and distortion of these ducts.

Eyes
Eye dryness may cause dry spots or ulcers on the cornea, leading to inability to wear contact lenses and in some cases scarring with reduced vision. Affected eyes are more prone to viral and bacterial infections."

Laboratory Tests
Only half of Sjögren patients have anti-SSA and/or anti-SSB (Sjögren’s Syndrome A and B) antibodies in their blood. Other tests which may be abnormal (ipso facto, may not be!) include the white blood cell count (low), total gamma globulin level (high), blood C3 and C4 complement levels (low C4), sedimentation rate (high) and rheumatoid factor (positive)." (more... this is a .org site)

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Everything you describe about your eyes sounds like Sjogren's and you won't know if it is or is not, unless and until you have the Schirmer's test. It's a simple test, don't hurt - and would be interesting for you to know your numbers: less the number more serious the dryness. I was at 3 a year ago, am now 2 - that's my right eye, Left is one number higher. I have cicatrices on the surface of my right eye - quite heavily scarred now. (Several times the lid has stuck to the eye surface...not much fun! )

Nice to have large pupils, mine are microdots - takes forever to dilate em, usually three doses to succeed! But microdots are a protective bonus... Glad to read that you wear dark glasses. Ensure the correct UVA approved lens. For outside, need wrap around glasses, to proect from wind. Be careful about dry atmospheres - c/h and dry are anathema to dry eyes! Put a bowl of water close to heating to ensure some moisture/humidity in the atmosphere.

Hugs to you lass - hope to h..l they can sort for you. Take care

http://www.allaboutvision.com/conditions/sjogrens-syndrome.htm

"Sjogren's Syndrome destroys glands responsible for lubricating eyes and other parts of the body."
Sjögren's) is an autoimmune disease that attacks and destroys glands responsible for keeping the eyes, mouth and other parts of the body moist and lubricated. For this reason, dry eyes are a common symptom.

Other eye symptoms that can occur with Sjogren's syndrome include blurred vision, a burning sensation, sensation of grittiness and light sensitivity.

Various tests may be needed to confirm a diagnosis of Sjogren's syndrome. A tissue sample (biopsy) for analysis may be taken from a salivary gland of your lip. The extent of your dry eye may be measured with a strip of test paper (Schirmer's test) inserted in the corner of your eye to measure the amount of tears that you produce in a certain period of time, generally about five minutes.

Dry eye may be measured also through vital dye staining, such as rose bengal (magenta dye), lissamine (green dye) or fluorescein (orange dye), with examination of the eye's cornea and conjunctiva.

The amount and quality of saliva produced in your mouth may also be measured. Your doctor may order other related tests, such as blood and urine analysis.

Certain markers in the blood — antinuclear antibodies (ANAs) — are specific for Sjogren's syndrome. These markers, known as SS-A (or SS-Ro) and SS-B (or SS-La) are commonly found in people with Sjogren's.

A simple blood test can detect the presence of these antibodies. However, you can still have Sjogren's even if your blood test result is negative for these antibodies. (more...)

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Lot of information out there, including of course, Mayo Clinic. But would seriously push for that Shirmer's test, the Benal test etc. You don't want that lip biopsy Nasty and unecessary!

Take care hon -

Meggie, this is stunning. I have never heard of anything like what you are experiencing. All I can do is sit here and shake my head. Alberta is arguably the richest province in the nation and I have difficulty understanding how they can deny that you need medical help. I don't know what to say about this.

I think you and Glen need to move here, so we can get you in with new doctors.

I wish I could make this stop for you, Megan.

Warm hugs,

Sorry, Megan, didn't mean to sound as though I were pressuring you to get seen by another doctor when you are trying! I don't understand Canada's system. Heck, nor do I understand the U.S.! Here in the states I was concerned that my own new eye doctor, not an inflammatory eye disease specialist, but a top notch eye doctor, gave me some conflicting information about my eye condition after a recent flare up of uveitis. So, I contacted the specialists in the nearest city and made an appointment. I did not need a referral or anything. I hope my insurance will cover most of it! lol I was just wishing it were that easy for you; just to get seen asap by someone who is very knowledgeable and caring. I'll keep you in my thoughts and hope for the best.
Jan

Good luck with your appointment on Wednesday, Megan! Hopefully you'll get more answers and won't need to look any further, but here are some recommended specialists hopefully vaguely in your area (or your sisters) if you do want a second opinion (details from Mike from the iritis/uosg sites):

DR Wade or Maberly are in Vancouver, CA. Both are excellent.
DR Grieve (sp) is in Edmonton and there is Dr Kerrani (sp) in Calgary, alberta, CA.
Contact info can be found here:
http://parsplanitisforum.yuku.com/topic/33

Take care,
-Anke

Oh no Jan, that's my fault - I didn't mean to come across that way at all. I think I was just using your post as an excuse to to vent, that's all. I totally agree with what you said. I'm just so frustrated and angry by it all the hold up here. I should probably be using a journal to write/vent, rather than doing it here.

I realize no healthcare system is perfect... pros and cons to both the US and the Canadian system. The Canadian system is very good for emergencies and such... I've seen that twice in the past 2 years with my dad's serious emergencies. They were so good at seeing him asap and having him in surgery within minutes. And there are no bills, no discussions of related money matters at all, it's very simple that way - I'm so thankful for that. It just seems that chronic conditions take so long to get attention for some reason.

Hope wednesday gives me some answers.

Anke, thank-you so much for the contact info! That's so nice of you to go to the trouble just for me.
I will ask for a referral to one of the doctors you mentioned if I don't get any help on Wednesday.
hugs!