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2nd round of Optic Neuritis, now what?
Hello All, I am new here and have been researching for weeks! This is my second round of ON in the same eye, the last one was approx. 1 year ago. This time the the blind spot as the opthomologist called it is much larger. This time when it happend I went to my GP who the same day sent me to my Optomotrist who withing 12 hours had me seeing an Opthomologist who has decided yes I have ON and no I am not willing to make a call on treatment that will be up to a Neurologist. ( I have an Appointment April 12th) At this appointment he wants to do an EEG and an Evoked Potentials test. (he did not say if he was going to do 1 or many) then when that is done I will see him. The original MRI I had was negative however no one is sending me for one of those this time, at least not yet. I am finding I am struggeling more this time with the ON then the first time, vision does not seem to be clearing as quickly this time as it did the first time. I see everything leading to MS but can it not be something else? How often do people get reoccuring ON when the first one was classed as idiopathic? I have suffered from a number of different types of Migraines over the years as well, 1 being what they classes as A-Typical, I get numbness in the right side of my face and feel like I am unable to get the words out, I think the words but they do not seem to come as quickly as I process them in my head. For some reason this time I am a little freaked out. I have been a pharmacy technician for 10 years now and a PSW (not currently practicing) for about 12 years. I find I am exhausted, my husband tells me I am more tired now then ever, but I also travel a lot for work and my job keeps me very busy. I am sorry there does not seem to be much in the way of questions here but it is deffinatly nice to be able to vent to people that may have an idea of what I am going through.
Cheers
Tracy
Cheers
Tracy
Hi Tracy and welcome.
Well ON can just happen on its own it doesnt have to belong to any other disease although that is rare from what I have read and is usually accompanied by many diseases as Sam has said.
Well my story on ON.
10 years ago approx I was in Brazil on holiday. I was enjoying myself so was well relaxed and happy. About 7 days into the holiday it was hot and we had gone out shopping. Suddenly for no reason at all I couldnt see out of my left eye you can imagine how freaked out I was I just clutched my hubby and scared him to death.
It took a few minutes for the vision to come back but it was blurry like i had been rubbing it hard. I must say i panicked a bit and cried and we went back to the Hotel. I wanted to go home and my husband had to get hold of the rep to see if we could go back to the UK. I remember laying on my bed feeling weird and so tired and I had terrible gastric reflux too.
The rep told us there was no chance unless it was a real medical emergency. I decided to see how i was the next day. I was fine, and the weather had cooled a little so we decided to stay and I must say i had a wonderful holiday and the episode faded.........
When i got home after a few months it was really hot. I had popped to see my daughter and was sat doing nothing waiting for my coffee when it happened again with the same panicked result which freaked my daughter out. Again it settled down and after about an hour I could drive home with the promise i would see my GP. I made an appointment and saw the NUMPTY the next day.
He didnt even check my eye I kid you not. He just hurrumphed and oohhed and ahhed and looked at me and if there could have been a BALLOON coming out of his head it would have read, OH BLOODY HELL NOT HER AGAIN.......tiresome women....
His diagnosis are you waiting for this...........................Perhaps you have had a bit of LOW BLOOD PRESSURE. I KID YOU NOT AGAIN. I hasten to add though he didnt even bother to check my BP at the time.......
After this episode I had terrible pain in my left eye god someone was pushing a knife in my eye ball, it was misty and burning for days and days and days......which turned into at least 6 months or longer I cant remember.
Then things started to go weird i started to drop things, got clumsy, off balance blah blah blah until about 5 years of this in 2006 it went all up poop.
NOW THEN, I had a VEP test which showed quite clearly that I had BILATERAL OPTICAL NEURITIS.
Now you would think with the stuff on my MRIS, my symptoms etc I would have been diagnosed with MS. OH NO I DIDNT............thats another story.
Recently I had to point out to my neuro that I did have this POSITIVE VEP (56% of people go on to have MS), AND he had forgotten so I did go for a blood test for Devic about 2 weeks ago.
So even with a positive VEP and MS symptoms it equals Limboland for me LOL.
16% of people with ON who have negative MRI still get diagnosed with MS so whats all that about......
I believe 2 things. IF I was 30 and a man I would have been diagnosed with MS.
As I am nearly 60 and a women well who cares...............and that is how I am made to feel.
So you keep positive you dont have inflammation in your optic nerves for nothing whether idiopathic or not. Whether or not it is MS (I truly hope not) it is caused by something and there are sadly lots of auto immune diseases that can also cause ON even diabetes....
Keep us informed. I have been away from the forum but life still goes on and sadly still more people find us as there just seems to be no answers for a lot of people who have these neurological symptoms. Hugs Mariax
Well ON can just happen on its own it doesnt have to belong to any other disease although that is rare from what I have read and is usually accompanied by many diseases as Sam has said.
Well my story on ON.
10 years ago approx I was in Brazil on holiday. I was enjoying myself so was well relaxed and happy. About 7 days into the holiday it was hot and we had gone out shopping. Suddenly for no reason at all I couldnt see out of my left eye you can imagine how freaked out I was I just clutched my hubby and scared him to death.
It took a few minutes for the vision to come back but it was blurry like i had been rubbing it hard. I must say i panicked a bit and cried and we went back to the Hotel. I wanted to go home and my husband had to get hold of the rep to see if we could go back to the UK. I remember laying on my bed feeling weird and so tired and I had terrible gastric reflux too.
The rep told us there was no chance unless it was a real medical emergency. I decided to see how i was the next day. I was fine, and the weather had cooled a little so we decided to stay and I must say i had a wonderful holiday and the episode faded.........
When i got home after a few months it was really hot. I had popped to see my daughter and was sat doing nothing waiting for my coffee when it happened again with the same panicked result which freaked my daughter out. Again it settled down and after about an hour I could drive home with the promise i would see my GP. I made an appointment and saw the NUMPTY the next day.
He didnt even check my eye I kid you not. He just hurrumphed and oohhed and ahhed and looked at me and if there could have been a BALLOON coming out of his head it would have read, OH BLOODY HELL NOT HER AGAIN.......tiresome women....
His diagnosis are you waiting for this...........................Perhaps you have had a bit of LOW BLOOD PRESSURE. I KID YOU NOT AGAIN. I hasten to add though he didnt even bother to check my BP at the time.......
After this episode I had terrible pain in my left eye god someone was pushing a knife in my eye ball, it was misty and burning for days and days and days......which turned into at least 6 months or longer I cant remember.
Then things started to go weird i started to drop things, got clumsy, off balance blah blah blah until about 5 years of this in 2006 it went all up poop.
NOW THEN, I had a VEP test which showed quite clearly that I had BILATERAL OPTICAL NEURITIS.
Now you would think with the stuff on my MRIS, my symptoms etc I would have been diagnosed with MS. OH NO I DIDNT............thats another story.
Recently I had to point out to my neuro that I did have this POSITIVE VEP (56% of people go on to have MS), AND he had forgotten so I did go for a blood test for Devic about 2 weeks ago.
So even with a positive VEP and MS symptoms it equals Limboland for me LOL.
16% of people with ON who have negative MRI still get diagnosed with MS so whats all that about......
I believe 2 things. IF I was 30 and a man I would have been diagnosed with MS.
As I am nearly 60 and a women well who cares...............and that is how I am made to feel.
So you keep positive you dont have inflammation in your optic nerves for nothing whether idiopathic or not. Whether or not it is MS (I truly hope not) it is caused by something and there are sadly lots of auto immune diseases that can also cause ON even diabetes....
Keep us informed. I have been away from the forum but life still goes on and sadly still more people find us as there just seems to be no answers for a lot of people who have these neurological symptoms. Hugs Mariax
Hi Sam, thanks for the reply, unfortunalty I did get my dates mixed up, My appointment is not until the 19th grr wishful thinking I guess. My origianl MRI was done on my brain and optic pathway's, although it was wonderful to hear it was negative I have a real hate for the word "idiopathic" mostly becasue I don't believe it, our bodies are complex yes, however they react for a reason, I just wish someone would figure that out and at least try, I feel sometimes the word gets used way too often and way too easily. Anyway that is my rant about something being idiopathic, I could go on forever but I will spare everyone LOL
Cheers
Tracy
Cheers
Tracy
Hi there Tracey and welcome...
but I'm sure I speak for all when I say I'm sorry you had to find us! Nonetheless, it's a great bunch of people here who're all determined to get to the bottom of our conditions!
I've not had ON dx'd. But I rather suspect that's been oneof the panoply of sx I have, and I notice it mildly recurring every 3-6mths or so. My personal hobbyhorse is the way that migraine is invoked to cover everything,when sometimes or maybeoften it isn't migraine at all. So, with that caveat, 'idiopathic' seems tobe the label they give most things that occur for the first time. Then it's a waiting game for the repeats.
Your ON seems to be one of several sx that fit a number of neurological conditions/diseases. What did the MRI cover? I think many of us here would say that it's a very good idea (and probably essential ) to get cervical spine MRI as well. MRAs of brain and spine are a good idea too.
The numb R face and jumbled words are very, very familiar to me and others here. It all comes and goes and is scary. These are other sx that point to the need for a more holistic test battery. MS seems to be such a weasel - everyone has such different manifestations, so unless someone has mentioned it as a possibility then I wonder if it;s worth being concerned about at this point?
EEG is interesting, is that something they normally do for ON? I thought it's used mainly for epilepsy and sometimes migraine.
Meanwhile, your license as a PSW should protect you somewhat from labels involving 'somatoform' conditions! Lucky you!
Again, welcome - and do come back and tell us what the April 12th tests were like and the results. Meanwhile, I'm sure others will have lots more knowledge than I have to share...
bestest
samxx
but I'm sure I speak for all when I say I'm sorry you had to find us! Nonetheless, it's a great bunch of people here who're all determined to get to the bottom of our conditions!
I've not had ON dx'd. But I rather suspect that's been oneof the panoply of sx I have, and I notice it mildly recurring every 3-6mths or so. My personal hobbyhorse is the way that migraine is invoked to cover everything,when sometimes or maybeoften it isn't migraine at all. So, with that caveat, 'idiopathic' seems tobe the label they give most things that occur for the first time. Then it's a waiting game for the repeats.
Your ON seems to be one of several sx that fit a number of neurological conditions/diseases. What did the MRI cover? I think many of us here would say that it's a very good idea (and probably essential ) to get cervical spine MRI as well. MRAs of brain and spine are a good idea too.
The numb R face and jumbled words are very, very familiar to me and others here. It all comes and goes and is scary. These are other sx that point to the need for a more holistic test battery. MS seems to be such a weasel - everyone has such different manifestations, so unless someone has mentioned it as a possibility then I wonder if it;s worth being concerned about at this point?
EEG is interesting, is that something they normally do for ON? I thought it's used mainly for epilepsy and sometimes migraine.
Meanwhile, your license as a PSW should protect you somewhat from labels involving 'somatoform' conditions! Lucky you!
Again, welcome - and do come back and tell us what the April 12th tests were like and the results. Meanwhile, I'm sure others will have lots more knowledge than I have to share...
bestest
samxx
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