I haven't posted much but I did post an intro a few months back. Things were seeming better and I've been trying to not think too much about whether this is MS.
But yesterday I started having pain again behind my eye and when I move it in any direction. I had ON late last year in the same eye.
I called the ophthalmologist after hours number and the person who called me back said that I'd be fine through the weekend and they'd fit me in on Monday.
Well now I have a black spot in the middle of my vision field. I've never had that before. Before I just had blurry and then dim vision as it returned.
I've left a message for the oncall neuro but nobody has called me back yet? I'm a bit freaked out. Also the last few days I've had problems with my legs feeling weak and some on again off again vibration down them. Now since this morning my left foot has been vibrating non-stop.
I think the one with the spot seems bigger and seems to take longer to get smaller when I turn the overhead lights on.
When all this started last time I had really bad headaches and vertigo but then progressed to buzzing in my leg and foot and eventually my one leg/foot went numb and I developed the ON.
I haven't had any really bad headaches the last while despite being off the preventive headache med but I did have a few instances of vertigo last week and now between my legs and foot feeling weak and with the buzzing/vibrating and my eye acting up I'm afraid it's all starting over again.
Honestly, while it probably seems foolish I had repeatedly refused the IV steroids because of a very bad experience with oral steroids that I'd had but I did finally agree to a short course with an oral taper and that is what seemed get me back to feeling somewhat normal. I've felt the best I've felt in months the last 3 or so weeks and now I'm terrified it's all beginning again.
I had retrabulbar neuritis 14 yes ago. Now I have one Pupil bigger than the other, started off all the time, now only in dimmed light. I like you have all sorts of symptoms. You need to see a neurologist and have a brain scan and visual evoked potential tests, im waiting for mine to come through. It is really frightening, but I do know that optic neuritis does get better. Have you seen a neurologist yet? Go to the eye hospital, they should know what's going on with your eye and could maybe refer you.
Thanks. Yes, I've seen a neurologist (2 different ones actually. they are partners in the same office but mine was called away so I ended up with two different opinions) one said probable MS, the other diagnosed it as an isolated episode. I have had 2 MRIs that showed some lesions. The second did show a couple more tiny ones as well as 2 on my spine, but it was a better machine from what they say.( my spine wasn't done the first time). I also had 3 o-bands in my LP.
I had really hoped the second partner was right and that this was all just caused by an overactive immune reaction to an infection that would subside and leave me alone, but now I'm doubting that is the case. I actually thought I might have West Nile or something as I had been bitten dozens of times before any of this started and as I said it started with debilitating headaches etc.
I had the VEP done last time I had Optic Neuritis, but my vision had basically returned to normal over the last two months.
Anyways thanks for asking. I guess I'll be OK waiting until tomorrow. I just got a bit freaked with the dark spot in my vision field.
I am answering to say that you are not alone with ocular pain. And to give you at least a comment of ..I care! .mine started about a yr after cataract surgery on same eye,..15 months ago.. It reoccures...severe episodes that concur with moderate to sever trigeminal neuralgia pain..I have non-diabetic neuropathy pains.. I cannot say with anything other than sympathy ..what you go thru.. You must see an eye specialist.... About your eye! you said you have an SOS left for neurologist....keep trying...this is nothing to fool around with...you know that or you wouldn't be posting,my neurologist refers me out, sympathetic, put me thru 45 minutes of walking, poking, general weakness evaluation...., of your legs tingling, diabetic.?.might be something to do with that? I am not a doctor but keep a diary of past and future events til you see med professional!..then make sure you take it with you..don't forget it...I even try to give it to my doctors.. got on u-tube and saw people with varying degrees of ocular pain...if severe, and strong pain meds make life unbearable, or quality of life issues, there are methods ie stim units placed in brain with battery to collarbone, etc... (Grim but for your info...helped me to know there was something as my neurologist did not mention that to me..!)... Hope you get answers soon! Let me know how you are doing!
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