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.
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 again
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. 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.
