New to Autoimmune Diseases, concerned blurry vision

It's good you went to an opthomalogist. I had blurring vision, losing seeing colors, flashes of light and black spots. I have Smoldering Myeloma (and PMR). Since I had an oncology appointment, I waited and asked him about the vision. He said it wasn't cancer related (which may or not be accurate) and discounted the issue. I called an opthomalogist right after and he told me to come in. It's the central vein in my eye being closed off by swelling and I'm undergoing treatments. Sight is diminished, try not to drive at night. I'm glad you're being careful, seeing the right people and asking the right questions. Best to you.

Hi,

Sorry about your blurry vision. I hope you are OK.

I am female 44 years old with autoimmune disease diagnosis scleroderma with very similar intermittent severe blurry vision problems (predominantly left eye), similar severe eye pain problems, including severe headaches/migraines, and intermittent color vision saturation loss, as well as morning uveitis (“red and veiny eyes”), intermittent photosensitivity (days to weeks of pain and severely hating office lights, and sunlight is too bright, etc.)

For me, it was elevated blood ammonia (hyperammonemia) contributing to my blurry vision issues and many other neurological issues.

What has helped me with reducing blurry vision and other neurological issues:

1. L-ornithine L-aspartate (LOLA): 6g-12g/day divided doses - to reduce ammonia

2. Eating 0.25 ounces of liver pate about every other day or so for “meat based” Vitamin A (retinol). Vegetable based Beta carotene or supplements didn’t work for me. I make the chicken liver pate at home from the $3 tubs of chicken livers at Whole Foods. Don’t eat too much liver, just a bit, otherwise Vitamin A (retinol) toxicity. Know that 0.25 ounces is just a small bite of liver pate.

3. Eating less protein overall, moderate protein diet - to reduce ammonia.

4. TUDCA tauroursodeoxycholic acid: 250mg-750mg/day - to help bile and fat soluble vitamins (A, E, D, K) digestion and eyes. You can read about TUDCA how it also helps with photosensitivity. It has taurine in it which also helps the eyes. It’s basically bile to help you digest to get nutrients to your eyes. I have autoimmune scleroderma so I have malabsorption issues of the stomach.

5. Probiotics (Lactobacillus GG, S. Boulardii, Bifidobacterium) - to reduce ammonia

6. Asking my doctor for alternate prescription drugs or dose reduction - to avoid drug-induced hyperammonemia. See WHO list of drug-induced hyperammonemia.

7. Re-assessing my use of over the counter pain killers that can also cause drug-induced hyperammonemia. See WHO a list of drug/induced ammonia.

8. Sometimes: Very low dose doctor prescribed Lactulose (2.5 to 5mL/day, approximately, which is the pediatric dose) - to reduce ammonia if neurological/vision symptoms severely worsens.

9. Blue-Blocker Sunglasses: I bought the orange tinted blue blocker overlay glasses for really bad days so I can at least drive and go to the grocery store and withstand the lights. I don’t need them as much anymore if I focus on reducing my blood ammonia and ensuring Vitamin A (retinol) to my eyes, by using the methods mentioned above.

All the above is for people with liver disease or overworked livers, who need to reduce their blood ammonia levels. I don’t have any of the biomarkers for liver disease and according to all the tests my liver is considered fine/normal…. but my mom had autoimmune primary biliary cirrhosis/cholangitis (PBC), so I could be on my way to eventually getting PBC. For now, besides autoimmune scleroderma, I have a diagnosis of what is known as “covert encephalopathy”, where blurry vision is one of my neurological symptoms. In addition to genetic issues, likely, some of my various medications over the years probably contributing to my ammonia inching up over time. See WHO list of drug-induced hyperammonemia. All these compounding factors can “add up” to elevated ammonia over time or at least intermittently.

Note that testing the blood levels of ammonia often don’t correlate directly to the severity of the encephalopathy in “covert encephalopathy” so my doctor and I have to go by my symptoms. Moreover, as an outpatient, it takes the lab 7 days to get ammonia results anyway.

It took me years to figure out my increasingly worsening “blurry vision” was associated with ammonia. Some of my eye damage is probably permanent, although I hope for improvement. For me, none of the MRI’s, CT’s or any of the opthamology or neurology tests ever revealed anything. Rarely, if ever, is a blood ammonia test ever done unless you have obvious “overt encephalopathy.”

Neurological symptoms of “covert encephalopathy” can easily be brushed off as fatigue/pain, emotions/stress, aging/being-tired, just a headache/migraine, just neck pain, etc. So, my blurry vision was brushed off as everything it wasn’t: allergies, dry eyes, too much cell phone use, stress, sleep, aging, etc.

Focusing on my liver health and methods of reducing ammonia helped reduce my blurry vision and my vision loss. My migraines, fatigue, pain, cognitive issues, emotional balance, etc. also improved. Again, I just say “reduce”, not “eliminate.” There is definitely more going on than just ammonia, but reducing my ammonia helped systemically with everything, my blurry vision included. I have to be satisfied with any improvements, even if not perfect resolution.

It is very frightening to experience blurry vision and potential vision loss, and light sensitivity can be very ‘emotionally frightening,’ to put it mildly.

I hope your vision is going to be OK. I surely don’t know, for sure, if it’s an ammonia issue for you, and I hope you have a receptive doctor who might consider “covert encephalopathy” as a possibility and who can advise you on what to do to help you. Maybe if you also have it, you can catch/reduce your elevated ammonia before it goes on unknown as “covert encephalopathy” for too many years like me. Good luck!

References
1. Drug-associated hyperammonaemia: a Bayesian analysis of the WHO Pharmacovigilance Database, 2022, Alexander Balcerac.

NOTE: I have mutated genes for porphyria (FECH) and retinitis pigmentosa (TRNT1 mitochondrial disease) so it is uncertain if my blurry vision problems are entirely ammonia-related or if those vision/light related mutated genes are factors. The belief is that my porphyria genes and mitochondrial disease genes could just be making my eyes more susceptible to the effects of the elevated ammonia. than what most other people without the genetic susceptibility and compounded by my autoimmune scleroderma disease would experience. I don’t know if you have ever had genetic testing. Either way - Regardless of whatever the genes say, all of the above ammonia reducing methods, and TUDCA, and meat-based Vitamin A (retinol) helped me improve my blurry vision and light sensitivity and headaches/migraines, neck pain, etc. Your eye issue seems very eerily similar to mine, which is why I’m writing such a detailed post. Best of luck with your doctors help!

I experienced blurry vison and saw my ophthalmologist assuming my cataracts had matured. Instead the Sjogren's that had previously only caused dry mouth was causing dry eyes, which, in turn, was causing the blurriness. As you explore autoimmune diseases, Sjogren's should be on your list to confirm or eliminate. Once thought to cause only dry mouth and eyes, we now know it can affect many different organs (often misdiagnosed as fibromyalgia) .

@Ini888 I wonder if the ice pick headaches on the same side as the blurry eye, could be a clue. I get blurry vision with migraines but that is episodic and it sounds like yours is more constant. Cataracts are an issue for me, but not you apparently.

Did the prednisone affect the blurriness? If so, could the biopsy have missed it because the prednisone had reduced inflammation?

You seem to have all the right doctors who are being quite thorough. Neurology and vascular neurology are both a good call. Not clear on what rheumatology found: is your ANA positive or was it sed rate or CRP that was positive?

There are all kinds of (brain-based and neck) connections between auditory, visual, facial, eye nerves that aren't fully understood. I am trying to get to the bottom of a painful connection between hearing/loud noise and facial nerve pain and numbness
I am not making progress. I do have a lupus diagnosis but that is not helping! I hope you have better luck!!

Following up on ANA. You asked what rheumatologist found and in previous post I responded that sed rate and CRP were positive/high and that I had to check the ANA. So ANA was negative. Rheumatoid factor was slightly above normal.

Also, I forgot to put in my original post that I was diagnosed and treated for Lyme Disease about 29 years ago. Rheumatologist did do current Lyme IGG/IGM AB result 0.15 (normal less than 0.90).