Hello everyone. I haven't been on here in a while, but after searching numerous forums, I've found that I get the best advise and well educated responses here at MedHelp, so I'm back :) Recap: diagnosed in 2014 RRMS - started Copaxone, experienced pretty much constant symptoms - buzzing, tingling, tapping, numbness, fatigue, heavy legs, dizziness, etc. until I was put on Gilenya (after a very brief attempt at Tecfidera due to intolerable stomach upset) and I have been completely symptom free now for a year. In the last year I have lost 100 pounds and have been doing intense boot camp style workouts for several months and doing just great all around.
About 3 weeks ago, I started having dizziness, faintly fuzzy/kaleidescope vision, heavy legs like sandbags and arms too, and various cold/hot sensations everywhere - toes, face, arms, legs, etc. After speaking back and forth with my neurologist, I had testing done through my PCP (found only low WBC 2.1 and obviously lymphocytes due to Gilenya, otherwise normal and no UTI) and went to see an opthalmologist - found that my left eye was abnormal with visual field testing indicating potential optic neuritis in my left eye (originally had it in my right eye only). Currently, I haven't gotten so much as a phone call from my neurologist or PA in regards to this, but after they got the eye results, they emailed me saying "we want to give you steroids, do you prefer oral or IV steroids?" For some reason, this really made me mad. Here I am in my first relapse in a year after being very successful on Gilenya and having my first "clear" MRI with no new lesions in January 2017.
This whole thing is just extremely upsetting to me, I've found myself just so cranky, anxious, upset, just irritable and angry and unpleasant to be around in general. I don't even feel like myself. I don't want to take steroids due to side effects and weight gain, mood swings etc. But I just don't even know how to respond. None of my symptoms are severe enough to require intense treatment or steroids. I guess I'm just upset b/c it was nice pretending I wasn't sick at all for this last year. I don't know when it's OK to resume normal activity. I've already surmised that boot camp workouts are out of the question and yoga/pilates might be a better avenue for me physically and emotionally. I just needed someone to talk to who understands. My family just doesn't know how to be there for me and for some reason it just irritates me even more when they try to come up with explanations that ISN'T MS. I know they're trying to help but it just makes me more irritated and like i'm making it up.
thanks for listening, let me know if you have any advice.