Category Archives: Optic Neuritis

Gilenya = Fail

Ok, here’s the scoop:

I’m still waiting on my IgeneX lyme test results.

I am off Gilenya for good because I was having bad, scary heart palpitations and am currently relapsing with loss of vision in both eyes, cog fog and weakness in my left leg.

I have an MRI tomorrow afternoon, after which I am starting a three day course of IVSM again.

Then I have a washout period of no medication and will be likely starting Tysabri.

Thus far, I have had Copaxone, Avonex, Gilenya, 2 CCSVI procedures, LDN, and 8 IV solumedrol infusions.

I am so ready for something to give, finally for the positive.

Looking at Yourself in a Steamy Bathroom Mirror

I have to apologize if my spelling sucks today.

I am having issues reading stuff on the computer because parts of words blur out on me. I try to go back and look to see if I wrote everything correctly, and I see weirdness – those of you who experienced Optic Neuritis would understand.

It’s basically as though you are trying to look at yourself in the mirror of a steamy bathroom. I am seeing my opthalmologist tomorrow to get my vision checked and to have my visual fields done. Right now, I am not sure it’s ON but rather the large lesion in my occipital lobe acting up againĀ 

I have to get off the computer now for a bit because my eyes are going wonky and starting to hurt.

Some days are good and some are bad

Some days are good and some are bad. I limp quite a bit because of my left leg weakness, and my eyes are still bad making it difficult to read and see sometimes, especially when I am fatigued. My left arm is still weak and not 100% with coordination, but I think it is a bit better. It all sucks though because I just never know what kind of day I will have until I roll out of bed in the morning.