Macular Degeneration + Seronegative Spondyloarthropathy

by Marcos
(Brazil)

I am from Brazil, 40 yo, male, blue eyes, my grand-grandparents were from Germany and Portugal;

20/35 on right eye and 20/30 on left eye.

I became very sensitive to light and need sunglasses even on rainy days;

I have a ring-shaped central scotoma and the vision inside the ring is good.

I have a poor field of vision but it allows me to see wide enough so I don't stumble into people. Just recently, I was diagnosed with "Dominant Macular Dystrophy".

I like the night better than day as light hurt on my eyes. On very dim light I have to look kind of diagonally from my target to use a more preserved area of the retina.

I am slowly loosing interest in sports on TV, since I have difficulties to follow the ball.

The same happens with the mouse pointer (if I could only enlarge that ball...). I have to invert the colors of my screen to make it more comfortable (thank you apple for control-option-apple-8!).

I only drive short distances, very carefully, only on places that I know by heart. Driving is always a very stressful situation and I avoid it the maximum I can.

I have always been short sighted. I remember once, when I was 18, during a fundoscopy on a routine exam, the doctor asked a colleague to see my eyes because of the coloring of the retina.

I remember him saying that it looked like "Bull's Eye".... But, in the end, they said there was nothing to worry about and life went on.

My vision (myopia) was getting worse but glasses were working well. Except from my right eye, which never corrected better that 20/35.

When I was 30, I underwent Lasik surgery. My left eye was 20/20 and my right eye was 20/35, corrected. At that time, I was wearing very thick glasses.

I regret having done Lasik, as it may have been some kind of trigger for the worsening of my condition, but at the time, the result was fantastic. I was 20/20 and 20/25 without glasses!

I stayed two years with good vision until, all of a sudden, when I was 32, I needed glasses again.

Not as thick as before, but my eyesight had definitely deteriorated. Not sure if there is any correlation, but I had an emotional trauma during this time...

Then I started having trouble in finding the mouse pointer on the screen and my contrast perception started to get really bad.

When I was 34 I went to a retina specialist and I had some tests: ERG, vision field and angiography. ERG tested sub-normal on scotoptic and photoptic phases; field of vision showed scotomas around the macular region and some sparse blind spots all around the rest of the field; angiography showed leakage and drusens.
This doctor said that I had retinitis pigmentosa of the "inverse kind".

I was terrified with the prognosis and started to read a lot and to see as many doctors as I could and to look for help on the local retina support organization, which referred me to other doctors.

I think that it is always better to ask for help from someone who suffers from the same thing as you.

In the last 6 years my eyesight got worse, slowly. The central ring-shaped scotoma is much more sharp now and coping with sunlight is being a pain. I still correct to 20/30 on left eye and 20/35 on right eye. It is almost like a "normal" life. Thanks!

There is another interesting aspect of my medical history. When I was 2 years old, I was diagnosed with deficiency in the absorption of vitamin-D / hypocalcemia.

From age 2 to 18, I tested regularly: calcium, phosphorus and alkaline phosphatase and took ergocalciferol 4000UI daily (dosage varied according to test results).

I have always felt stiffness and pain in my joints, specially after a period of rest.

When I was 20, I went to see a rheumatologist because of heel spurs on both feet that was hurting very bad. I had an MRI of the sacroiliac joints, x-ray of the heels and a blood test.

MRI showed inflammation and blood tested positive for HLAB27. I was diagnosed with "Seronegative Spondyloarthropathy".

No one has ever found any correlation between the two diseases. Perhaps it is just bad-bad luck :)

Now, I am 41, was blessed to have a wonderful wife, and I am doing my best.