Aa
New with ON and a million questions...
Lots of questions but I will start with a couple.
First my story I guess:
Woke Sunday morning right eye off... Monday worst... Wednesday bad... Eye doc appt sent to specialist Friday.. Diagnosis ON iv steroids 3 days 10 day pred taper. Eye sight great by 5 days in... By end of pred excellent...
Fast forward... Yesterday and today this is one week after finishing the last dose of taper... My right eye is going fuzzy (the static tv part) again.. Colors a bit off... Without glasses my eye is useless... With glasses it is ok but bright.
Bright lights at night in dark are back in that eye too. I have a cold... Left eye yuck in am with goop.. Left effected by on eye is not goofy in am.
Does this make sense? Anyone else have this... I am blaming the cold ATM... If no better I am thinking of call eye specialist again... I am not to return to him until the 28th currently.
He wanted me back this week but I go for MRI may22 and I wanted to wait until after that to get results. Now I am regretting that a bit. :/ I know he will take me the same day if I call... But should I?
Ok so my next question... I have symptoms of ms.. They can all be blamed on other things though so my vote is my MRI will be clear,,, I am crawling google every night though so maybe I am not so sure on that statement. However my point is... If the MRI comes back with lesions I get it.. I g on meds etc lots more to learn and deal with... My question is.. What if nothing comes up? Do I live with the thought that maybe in a few years ms will kick in gear? Do I live thinking about this? Or carry forward and just pretend like nothing happened?
I wonder if I am like everyone else and have joined limbo land.... Where there is no diagnosis... But ON still happened... Will my doctor go through other options that could have caused this?
Ok enough with my questioning,,, thanks for reading!
Thanks for all the great info on this site too!
First my story I guess:
Woke Sunday morning right eye off... Monday worst... Wednesday bad... Eye doc appt sent to specialist Friday.. Diagnosis ON iv steroids 3 days 10 day pred taper. Eye sight great by 5 days in... By end of pred excellent...
Fast forward... Yesterday and today this is one week after finishing the last dose of taper... My right eye is going fuzzy (the static tv part) again.. Colors a bit off... Without glasses my eye is useless... With glasses it is ok but bright.
Bright lights at night in dark are back in that eye too. I have a cold... Left eye yuck in am with goop.. Left effected by on eye is not goofy in am.
Does this make sense? Anyone else have this... I am blaming the cold ATM... If no better I am thinking of call eye specialist again... I am not to return to him until the 28th currently.
He wanted me back this week but I go for MRI may22 and I wanted to wait until after that to get results. Now I am regretting that a bit. :/ I know he will take me the same day if I call... But should I?
Ok so my next question... I have symptoms of ms.. They can all be blamed on other things though so my vote is my MRI will be clear,,, I am crawling google every night though so maybe I am not so sure on that statement. However my point is... If the MRI comes back with lesions I get it.. I g on meds etc lots more to learn and deal with... My question is.. What if nothing comes up? Do I live with the thought that maybe in a few years ms will kick in gear? Do I live thinking about this? Or carry forward and just pretend like nothing happened?
I wonder if I am like everyone else and have joined limbo land.... Where there is no diagnosis... But ON still happened... Will my doctor go through other options that could have caused this?
Ok enough with my questioning,,, thanks for reading!
Thanks for all the great info on this site too!
Best Answer
I am currently in limboland myself.I was diagnosed with fibro in' 02,but have felt all along that I may have MS.Lesions don't always show up.I've had a couple of MRIs with/without contrast.But I've just gone through a different kind of flare and I think I may have gotten my neuro's attention this time.Over the weekend he prescribed a muscle relaxer.I have an appt to see him this coming Monday morning.
I also had what appears to be ON...only with the left eye.Before the headache and eye pain set in,I was seeing a black dot in the center vision of each eye.Although the pain is gone,my eyesight is dimmer.I have to wear sunglasses during the day.
I had the myoclonic jerks until I started taking the muscle relaxer.My legs have been affected and I walk slower now (legs feel heavy).
Keep us updated as to how your MRI turns out and when you go back to the eye specialist.
I also had what appears to be ON...only with the left eye.Before the headache and eye pain set in,I was seeing a black dot in the center vision of each eye.Although the pain is gone,my eyesight is dimmer.I have to wear sunglasses during the day.
I had the myoclonic jerks until I started taking the muscle relaxer.My legs have been affected and I walk slower now (legs feel heavy).
Keep us updated as to how your MRI turns out and when you go back to the eye specialist.
Thanks for the reply!
Is the muscle relaxer working for you? Do you walk slower bc of sore muscles? In legs or back? I hope they are working for you. Do you have numbness or tingling?
I have tingling hands and numbness at times but I blame carpal tunnel... Have only had pain with overuse.. Like rolling fondant! Never again..lol.
My eye is the same today... I don't understand why after the steroids it was awesome! Better vision than I ever had and now it is going downhill again.
My right eye.. The effected by ON one has a big red blotch in it now... I assume this is all cold related... I coughed half the night and spent the other half with my baby girl who also had a restless night. So tired and a cold makes my eye bad.. I am hoping it will go back again when this cold goes away.
Is the muscle relaxer working for you? Do you walk slower bc of sore muscles? In legs or back? I hope they are working for you. Do you have numbness or tingling?
I have tingling hands and numbness at times but I blame carpal tunnel... Have only had pain with overuse.. Like rolling fondant! Never again..lol.
My eye is the same today... I don't understand why after the steroids it was awesome! Better vision than I ever had and now it is going downhill again.
My right eye.. The effected by ON one has a big red blotch in it now... I assume this is all cold related... I coughed half the night and spent the other half with my baby girl who also had a restless night. So tired and a cold makes my eye bad.. I am hoping it will go back again when this cold goes away.
The muscle relaxer is working great! I'm able to sleep through the night without the jerking and spasticity that were all keeping me miserable AND awake!
My legs feel heavy at times.They don't hurt anymore because I'm taking the muscle relaxer.However,I still get burning & tingling sensations.
I have the tingling,numb hands too...and like you I blame carpal tunnel.It's really miserable when you can't take more than 2-3 bites of food before your fingers are numb! You ought to see me try and hold an inkpen!
I'm a big coward when it comes to hospitals and medical procedures;so I never went to ER during this flare.I'm feeling the anxiety come on as I think about my appt with my neuro Monday morning....breath in and exhale!
My legs feel heavy at times.They don't hurt anymore because I'm taking the muscle relaxer.However,I still get burning & tingling sensations.
I have the tingling,numb hands too...and like you I blame carpal tunnel.It's really miserable when you can't take more than 2-3 bites of food before your fingers are numb! You ought to see me try and hold an inkpen!
I'm a big coward when it comes to hospitals and medical procedures;so I never went to ER during this flare.I'm feeling the anxiety come on as I think about my appt with my neuro Monday morning....breath in and exhale!
Hi there,
My advice? No more crawling google for you! Stick with your doctor, get your MRI, and do not, I repeat do not, figure you know what this is.
It's the best advice I have. If google could dx MS and so many other disease we'd not need doctors. It's simply not good practice.
Hang in there, and please don't think I'm being insensitive - I just hate seeing people getting panicked by what they deduce they have based on all they read on the web and felt you could appreciate the bluntness :)
-shell
My advice? No more crawling google for you! Stick with your doctor, get your MRI, and do not, I repeat do not, figure you know what this is.
It's the best advice I have. If google could dx MS and so many other disease we'd not need doctors. It's simply not good practice.
Hang in there, and please don't think I'm being insensitive - I just hate seeing people getting panicked by what they deduce they have based on all they read on the web and felt you could appreciate the bluntness :)
-shell
p.s. Lesions at the time of ON does increase your odds of developing MS. I'll pull the article on the study for you.
Shell-- no more google for me,,, lol.. I find nothing really pertains to me that's why I came here bc I find all of you have true experience with the ON ... I just wish I knew why my eye is getting worst after being so good...
I truly do not believe there will be lesions on my MRI... I just hate the fact that I can't ever say I am clear I guess...
Anything I have for ms symptoms are all explainable to me except this ON thing. Hopefully I can just put this all behind me and run like he!! So it can't ever catch up :)
I truly do not believe there will be lesions on my MRI... I just hate the fact that I can't ever say I am clear I guess...
Anything I have for ms symptoms are all explainable to me except this ON thing. Hopefully I can just put this all behind me and run like he!! So it can't ever catch up :)
You could request a referral to a neuro-opthalmologist for another opinion.
Double vision.....i am going though the process... I will go back to my eye specialist after the MRI ... He will refer me to a neurologist if there are lesions. He is a specialist of eye disease and surgery of the eyes.... I do not know if I will get a neuro-ophthalmologist.
If I do have lesions I will ask about that... Thanks.
Shell- that is great info... Although it does not comfort me :/ it is realistic numbers. I did not know the MRI would show old and new lesions... That is interesting.
If I do have lesions I will ask about that... Thanks.
Shell- that is great info... Although it does not comfort me :/ it is realistic numbers. I did not know the MRI would show old and new lesions... That is interesting.
Cramp n my style -- I feel for you with your hands.. I have very mild carpal tunnel in comparison. Just the numbness and occasional pain from overdoing it only.. Like crochet and fondant
Hope your appt goes well on Monday.
Hope your appt goes well on Monday.
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