Hello all,

I went to a 2nd neuro opthamologist yesterday. My first was in 2015 and I had not been diagnosed with SFN then. Because my photophobia continues to debilitate me and dry eye seems to be gaining ground, I thought time for another discussion and look...new theories, new meds, new therapies, new Dr., ...who knows??? In addition, I was seeking info on Corneal Confocal Microscopy in hopes of being progressive. Here's what I learned:

1. After being tested, my dry eye is of mild to moderate status

2. It is believed that I suffer most from neuropathic pain/ Central Sensitization

3. Corneal Confocal Microscopy, from this Drs perspective, is not believed to be of much benefit to me nor did he have the microscope or think worthy of pusuing at the local hospital that does have it. (I will see a new Neurologist at that hospital next week and pursue again)

Here is what I was offered:

1. FL-41 (rose/crimson tinted glasses). Axon Optics was suggested but it appears there are other vendor options

2. Novo Tears - Hunt Valley Pharmacy = plasma from your blood draw is recreated into your own natural tear drops in a bottle. 6 month supply = approx $400

3. Restatis or Xiidra script

4. Inveltys (loteprednol etabonate othamalic suspension) 1% drops. Corticosteroids. Free sample given to me for chronic pain of eye. Although I've been on Prednisolone drops since transplants so I need to look into that today with my current prescribing Dr. Doubt I can do both and this is why I hate things being given to me on a Drs way out the door....here, try this!

Perhaps the best news of my visit was the fact that this Dr. picked up his phone and voice to text a message to a Mayo Clinic Opthamologist, about my condition since corneal surgery 7 years ago, and told him I am coming to Mayo rehab, FL in October. The goal is to have me seen while there! Also, Mayo has the CCM and maybe it might be worthy of a look.

I'm going to keep positive on this whole plan but am not holding my breath completely as I know how these good intentions sometimes go. Time will tell!

As with most anticipated Dr visits...I go prepared with lists and questions and sure enough wait (I was there 2 1/2 hours total), locked in a 10x10 room for 1 hr alone and waiting for this Dr, uncomfortable from body pain and multiple flares from uncomfortable conditions and positions. My point is, he came in like wild fire...threw a lot at me, was all over the place, in and out, with another patient, etc... You guys know the drill! 🤪

I will be interested to hear of anyone's experience or knowledge of the products above (except Restatis/Xiidra as we've covered those products quite well...plus, I cant afford them anyway - haha!)

Have a comfortable day everyone.
Be well,
Rachel

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