Living With MS and Now Macular Degeneration

Life might feel simpler and less stressful if multiple sclerosis were the only medical condition I had to manage. Alas, it is not.

I have been collecting other chronic medical conditions over the years, too. Prior to my MS diagnosis, I suffered from a painful herniated cervical disc, recurring vaginal yeast infections, sciatica, arthritic facet joints in the lumbar spine, and allergic rhinitis.

Another diagnosis to add to the list

Since my MS diagnosis, I’ve developed IBS, recurring UTIs, postmenopausal hot flashes, lung nodes, atypical cells in an ever-enlarging thyroid, and severe sleep apnea. None of these were concerning. But it was the addition of a recent diagnosis that scared me almost as much as the emergence of MS 23 years ago: early-stage macular degeneration.

What is macular degeneration?

Age-related macular degeneration, or AMD, is a disease of the macula, the part of the retina that affects central vision. The dry form is most common and does the least damage. Aside from taking certain vitamin and mineral supplements, there is no treatment. The wet form is more serious and is the leading cause of blindness among older people. It is treated with drug injections and laser therapy.¹

Discovering my macular degeneration

I have been seeing an ophthalmologist annually for the past six years. I am now 64, and in November my doctor saw tiny drusen in the macula that hadn’t been there a year earlier. This is the first evidence of AMD. I had no symptoms, I could see just fine. Drusen were found in a routine dilated-eye exam during which I have a visual field test, Amsler grid test, eye chart reading, ocular pressure test, cataract check, floater check, MS-related optic nerve lesion check, and a retinal scan.

Dodging MS-related vision issues

Despite finding evidence of scarring on one optic nerve years ago, which was probably an artifact from a 2009 MS relapse, it never affected my vision. What’s more, during my 2020 exam, the doctor told me that scar had completely disappeared! I felt lucky. I had dodged a bullet and would never go blind from multiple sclerosis. Why, I thought, this could even be evidence of neuroplasticity. If the central nervous system (CNS) builds it, the function will return. Welcome home, I thought, silently tipping my hat to the jumble of nerves that allowed me to talk to myself in this way. I haven’t lost Kim, not even close.

While I reveled in my good fortune, fate had a big surprise ready to serve up in the guise of AMD. Although I did indeed dodge the MS-related vision loss bullet, I thought that meant I dodged every vision loss bullet.

Risk factors for macular degeneration

I was completely unaware of the risk factors of AMD. Having an immediate family member with it significantly increased my risk. Even though my mother had the wet form, she might have started with the dry form years earlier and didn’t notice any vision changes for a long time, not until the wet form took hold and zapped her central vision to the point where she voluntarily stopped driving after nearly having a traffic accident. That was when I started taking her to the eye doctor every three months for injections in both eyes to save what was left of her central vision.

My mother's story

As challenged as she was to see what was in front of her, she still beat the pants off me in canasta. That’s how good she was. She could beat the crap out of me blindfolded, which AMD pretty much did to her eyes. I affectionately called her ‘bloody mama’ each time she blitzed me, telling people she was a sweet mother to her children. But as a competitor in both canasta and Scrabble, she would eat her young. “You’re getting bloody,” I would gently chide, “that big a win was completed unnecessary, ma-MAH.” She would smile in silent satisfaction, then spare my feelings. “It was just the luck of the cards, honey,” she would say.

I miss my ma-MAH, who was not at all a sore winner. She was also a classic Stoic. She carried on uncomplainingly until she died of lung cancer a year later. Now that I’ve hit the jackpot for AMD, I hope I will not be a sore winner either. It was, as ma-MAH said, just the luck of the cards.