Optic Neuritis – Progress Update & Information Crowd-Sourcing

Good evening readers,

It’s been almost two months since I had a recurring episode of optic neuritis in my formerly good and unaffected left eye. Thankfully, there have not been anymore hospitalizations; only more doctors appointments and blood tests than ever before in my life….even compared to when I first had optic neuritis in 2017.

I’m writing today because I want to do a crowd-sourcing effort to get more input, more feedback from hopefully a lot of people.

I am looking for any input from anyone who knows anyone that has, or has had, optic neuritis. Did it clear up and go away? Did the damage to your optic nerves cause permanent visual impacts?

Can you suggest testing for something not discussed below? Anything I should be thinking about that, from what I’ve written below, that I don’t appear to be?

Are you a doctor that has dealt with or heard of this anomaly? Do you know a doctor that has encountered such an anomaly?? I have a lot of doctors baffled.

There are a few events that may have influenced the onset of the first episode of optic neuropathy. Here they are:
– I had my wisdom teeth removed 10/10/14. I had some sort of infection a day or two after that where I had not your normal mucus running out of my nose… Yea I know…disgusting. My sinuses have never been the same since then. I’ve had a scope up my nose by an otolaryngology doctor who was looking up there for about 5-10 seconds max and said “Nothing wrong here… you’re good.”
– A couple of weeks before the onset of the first optic neuritis episode in 2017, I had a few vaccination boosters. I believe they were polio, one of the Heps.. Hep A, Hep B, Hep C…not sure which. And the typhoid booster.
– I did a Tough Mudder half (5 mile obstacle course run). I took a tumble trying to get up a warped wall. Initially I self-diagnosed a minor concussion as the symptoms started during the week following that event. But after several doctors appointments and an MRI, I was told it was optic neuritis and that it should clear up in weeks to months. It’s been a year and a half.
– The day before the second episode started (this past November 2018) I attended an art show in an old manufacturing building that smelled of contamination by petroleum and metals. I was there from about 5pm to 9pm. The next day, I didn’t feel well at all. I was exhausted and my head felt like concrete. The day after that, I noticed the symptoms starting in my left eye.
– I hadn’t been sleeping well at all; I read that sleep apnea can cause optic neuritis.

During the onset of symptoms, my eyes only ached when I would do an extreme eye-roll. Otherwise, I only have occasional headaches and occasional sinus infections usually brought on by lack of fresh air while indoors and/or some kind of chemical fumes. I’m usually a very healthy person who never has to see a doctor. This is so puzzling.

Moving on to what doctors I’ve seen and tests I’ve had done…. Here is a chronology of doctors appointments and and tests that they ordered.

I have had probably between 30 to 40 vials of blood drawn for as many or more tests, I’ve had a lumbar puncture, an MRI, MRA (angiography) and MRV (venography), optical coherence tomography (OCT) images taken (twice), other images of my eyes… on and on.

Starting in November:

The Optometrist:
The optometrist did his routine examination with visual field test and other imaging of my eyes. He put me in touch with a couple of neural ophthalmologists who recommended that I be admitted to a hospital for IV steroids, MRI imaging of my brain, C-spine, and orbit, as well as be tested for neuromyelitis optica (NMO) and Lyme disease. NMO and Lyme disease came back negative.

The second neural ophthalmologist I’ve been seeing (who is COMPLETELY AMAZING!!) had me admitted to another hospital for more steroids and apheresis. The reasoning for apheresis was that it could potentially be a type of antibody that has for some reason started attacking my optic nerves. If you don’t know what apheresis is, it’s a very special machine that spins and separates the different components of your blood only removing the plasma which holds the potentially offending antibodies. I had five of these treatments and saw no major improvements over the course of the ten days.


After all of that, I had a follow-up appointment with my neural ophthalmologist. We decided throw a very wide testing net and just look for anything and everything.

She referred me to a rheumatologist for testing of any potential autoimmune diseases, infectious diseases. The rheumatologist ordered tests for:
– Protein Electrophoresis Serum
– Quantiferon Client Incubated
– Quantifieron
– C4 Complement
– C3 Complement
– Beta-2 Glyco 1 AB,1GA
– B2 Glycoprotein IGG/IGM
– Cardiolipin Antibody, IGM
– Cardiolipin Antibody, IGG
– Cardiolipin Antibody, IGA
– Hexagonal Phase Phospho Neut
– Immunoglobulin Assay
-Angiotensin Converting Enzyme
– Neutrophil Cytoplasmic Antibody
– ANA Specificity
– Bartonella Hensalae IGG/IGM
– Toxoplasma GONDII Antibody, IGG
– Cytology Non-gynecological
– Hematophathology

Only 11 vials of blood had to be drawn for all of that. I thought I was going to have to get a transfusion…hahahaha.

Then, the week before Christmas, I had my lumbar puncture procedure. When the very thin needle went into my spine…wow, that was the strangest sensation I’ve ever experienced. It felt something like a pinch, a strike to the funny-bone, and a muscle spasm all at once… very hard to describe; very weird. I was only on the procedure table for about 15 minutes. The doctor checked my entry pressures to make sure that the pressure wasn’t too high. Excess intracranial pressure is just one of many potential causes of optic neuritis.
Tests that were run on my spinal fluid:
– Beta HCG, Quant
– Special Chemistry: protein electropheresis
– Leukemia/Lymphoma Phenotype, Peripheral blood
– Protein Elect, CSF
– Protein CSF
– Myelin Basin Protein CSF
– Glucose CSF
– Cell Count CSF
– Body Fluid Culture and Gram Stain

If you ever have to have a lumbar puncture, my experience with it wasn’t totally terrible. But, the hospital had me lay flat on my back for one hour after the procedure. Do not let them rush you out of bed!! My primary care doctor said that I should have laid flat for at least three hours. It takes more than one hour for the spinal pressure to re-stabilize. I did have to take it very easy the first night and for about a week or less after. A couple days later, when I went to see my primary doctor, my pressures acted up and I felt extremely ill… NOT PLEASANT! I had to go straight home from that doctors appointment and lay flat all day. I felt much better later that evening, but golly, that wasn’t fun.

Christmas week: Where do I start?? Except for Christmas day, I had to see a doctor or get blood drawn every day. The one day I had two doctors appointments. That was fun.

I started Christmas week off with a visit to my primary care doctor who ordered more blood tests. Blood for these tests was drawn the morning of the 26th before I went to work. Tests included the usual general physical blood tests an some others.
– Prothrombin Gene Mutation
– Factor V Leiden
– HLAB27 Typing
– CMP, Serum or Plasma
– Lipid Panel, Serum
– TSH, Ultra-Sensitive, Serum
– Erythrocyte Sedimentation Rate (ESR), Blood
– Vitamin D, 25-Hydroxy, Total, Serum

Of those results, only the Vitamin D was deficient (thanks Syracuse) so I’m taking a supplement for that.

After looking at these results, my rheumatologist ordered even more blood tests, a chest x-ray, and a urine test.
– Cryoglobulin
– Urinalysis Auto w/Scope
– Urine Random TP/CRE Ratio
– XR Chest Frontal and Lateral

On the 27th, I went to the hospital for the MRA and MRV scan. On the 28th, I saw a dermatologist to make sure I don’t have any skin cancers which can cause the body to create antibodies to help fight infection which can then go after your optic nerves. I have one spot on my temple that the dermatologist wants to biopsy. That’s scheduled for later in January.

I also saw a gynecologist – all is normal.

Last week, I saw a hematologist to talk about any potential issues with my blood that could be causing it. She ordered more blood tests:
– Partial Thromboplastin Time (PTT)
– Homosysteine
– Factor 8 Assay
– Antithrombin III Activity
– Protime INR

My neural ophthalmologist, after discussion with the rheumatologist, referred me to a retinal surgeon to get images of my eye before and immediately subsequent to injecting me with a dye to ensure that blood is flowing freely through the blood vessels within my eyes and to look for any inflammation of the blood vessels. The dye made my vision go purple for a minute or two at which point I piped up and said…”ummm, is my vision supposed to go purple!??!” But that went away after a minute or two. The dye was apparently a saline-based solution and some got under my skin… OUCH!!!!! The nurse said that the dye would make my urine turn bright yellow…. she WAS NOT kidding. WOW. I drank lots of water to flush that out of my system as quickly as possible.

So, now you’re up to date. I have had more holes poked in my veins than my arms like to remember. Upcoming appointments include an ultrasound for my thyroid which my primary doctor said felt enlarged and the biopsy for the spot on my temple.

So; apparently, I have a marker for anti-phospholipid syndrome (APLS or APS) which makes my blood more likely to clot. But this needs to be confirmed by at least one (maybe two) more tests for the same marker 12 weeks apart. The next one is scheduled in mid-March.

I follow up with my neural ophthalmologist next week to hopefully wrap this phase up in a nice little bow.. NEXT.

My thought is, if the neural ophthalmologist doesn’t have any major new ideas, is to seek out a doctor that practices functional medicine. I want to get a larger, more holistic view and a second opinion on the matter.

After I got out of the hospital, I got 10 inches of hair cut off. Feeling fresh.
Photo from this past weekend… it was a beautiful day for a much needed walk in the sunshine.

5 thoughts on “Optic Neuritis – Progress Update & Information Crowd-Sourcing

  1. Anna,
    you are looking great with the new hair (or lack of), and the photos are beautiful, too, but sorry to hear of all the Dr. issues with your eyes. How about a visit to the Wills Eye Hospital in Philly? Gene M. had some recent eye issues and went there; they figured out his problem and he’s getting better.
    Good luck with it all!’


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