The standard advice regarding optic neuritis is that you'll only know the extent to which it has/will heal after about a year. A year is the time at which your return to baseline or 'new baseline' (level of permanent damage) is typically assessed.
Optic neuritis can be a slow healer. It doesn't respond quickly to steroid treatment, at least in terms of observable improvement to the individual. My one episode was still observable on examination many months later, though by the one year assessment my vision was back to baseline other than a slightly delayed pupil response.
You'll hear over and over again that MS and its manifestations are entirely individual. This is true. I can tell you all the facts about my episode of optic neuritis, but it could shed zero light on your own experience. Over one week, I lost entire vision in my left eye. Over about two months, the vision slowly returned, with "mangey" vision in the interval. It was not my first attack.
For me that was a multi-focal episode comprising loss of dorsiflexion and paraesthsia in my right foot and internuclear opthalmoplegia in my right eye. Following three days of steroids, both resolved in about a week. But there is absolutely no standard regarding what to expect with a first relapse.
Others on here are a lot more savvy about what does and doesn't constitute a relapse or pseudo-relapse. There are diagnostic definitions used by the medical professionals on this score. I'm sure they'll hope on later and add their knowledge/experience!
The thing with my situation is that I am just confused about whether I had what I've been told I had and thanks to my neuro not quite being forthcoming with information, I initially left with the idea of "oh something happened it will sort itself out".
The numbness I experienced on my arm and face lasted for a half an hour. The 20 odd migraines I had over a week, stopped with medicine I was given.
That all happened prior to neuro.
I had had visual issues for years (continuous) issues, not an event, so when I got told optic neuritis I was confused, because that's not why I came there.
Many of the visual problems ONLY resolved 4 years later with B12 injections when I requested my levels to be checked. They came back low but still normal. I had been taking supplementation prior to the test so I don't know if it made any difference. I was never tested at the time of the diagnosis, so don't know what they were then. There are permament moving dots in my vision (just like TV static) thankfully my brain can cancel it out, only see in right eye when left eye closed.
The interesting thing for me is that my right eye is the one I complain about, it was the one I had an enlarged blind spot, but everything talks about my left eye having optic neuritis.
Initial consult also, said I had no RAPD, but 2 weeks later the report said "no longer" RAPD
Evoked potentials said no evidence of optic neurits.
Reason (partly of going back) was double vision and tingling all over my body but latest MRI shows no active lesion, a new lesion but not active.
So much conflicting information and lack of answers :(
Hi and welcome,
I have to admit to also being confused on whether you had, what you were told.....
How did you get diagnosed with Optic Neuritis (ON) if (a) your evoked potentials showed "no evidence of optic neuritis" and (b) the original RAPD was normal ie "no RAPD"?
I also don't understand how your visual field tests could note after treatment there were "improvements" but you're saying your visual issues are still the same or how your visual issue are specifically in your right eye but the reports note the visual issue as being in your left? things definitely seem to not be adding up!
I would suggest you consider for the moment ignoring what you've been told, and just focus on the hard evidence, actually go through each of your reports and write down exactly what the finding or conclusions of each were to see if there are anything clearly indicating you have optic nerve damage (ON) or not, hopefully something will stand out more clearly.
I would also suggest considering getting a second visual and neurological opinion, which may help add insight into what is going on.
If possible you need an eye specialist familiar with MS. You do have eye issues.
With my optic neuritis, sometimes called optical migraines (go figure) afterwards I had color fading. Stop lights would only appear in two colors, green and orange. It was scary at first.
You need a neurologist that specializes in MS. There are many, many diseases that need to be ruled out, these have similar symptoms as MS. Many of us have spent years searching for answers before getting the answer we didn't want.
I'm not sure about the lesion healing in 6 weeks. I have never heard that before. Sometimes they become invisible when healing, but they heal incorrectly. Kinda like you and me playing electrician with wires and not having a clue what we are doing. This then causes the intermittent weird symptoms we live with.
Did your MRI, I mean, was your MRI done with and without contrast?
an active lesion would show up as a FLARE..
Be sure and keep a disc copy of your MRI for any new doctors. My first showed over 10 lesions and 3-4 neuro's (one an MS spec) told me there was nothing wrong with me but aging. (I was Dx at 69.) Then my current neuro, who walks on water, showed them all to me.
I had one more MRI in 2012, all were gone but a few and 3 new FLARES were there, so I had 3 new lesions, and I have them in my brain and spine.
Good luck, keep good notes from your visits, and yes, there will also be lots of blood tests!
We also have a sister forum for the undiagnosed, and you are welcome to put a foot in both forums!
Regarding the left / right issues, it's for that reason I didn't bother going back for the one year appointment, because he kept talking about the other eye AND the last appointment was a quick everything looking good.
But 5 years of frustration culminating in extreme fatigue got me going back and forth to GP and then I started having tingling all over and extremely frustrating cognitive problems, so she suggested nerve conduction study....so back to neuro, new mri done but didn't even get nerve conduction study done.
All of that is why my GP is sending me to another GP.
The details of what my reports say are in my previous post. It's a long one sorry :(
Sorry if I'm verbose, just been pretty much a couple of months of endless crying because of just now knowing where I stand and having nobody to talk to about it
I have made an error in my previous post…………..so everyone don't start scolding me (MS fog moment)
ocular migraines are not what you have. ocular migraines are the ripples you see or auras of confusion. I get them when I get too hot or turn the shower up too high as heat bothers my MS.
Well I hadn't been aware of any colour deficit, no tests were ever done, I was sitting one day trying to figure out the differences I was seeing with each eye. Then I thought about how in my right eye the colours seemed dimmer, I looked at a wiki entry on colour blindness and they had a picture of the American flag with different colour blindness.
I realised then that my right eye was seeing the red more as brown vs left seeing red. So that was how I figured that out, nobody had ever looked at dimming in my eye nor colour loss. Interestingly enough, I have recently seemed to have gained the red back, not totally, but it's better.
Yes I know ALL about the searching, this is actually the first time in all this time I've been looking at MS seriously, because there just was nothing told to me as to what was going on. Only upon getting copies of my medical records made me think that maybe MS I actuall what is going on.
So while I don't meet the mcdonalds criteria (his words) it does sound like that is where the neuro is looking (expecting). Each MRI says suspicion of demyelating lesion.
First mri (2010), 10mm t2/flair hyper intense nodule which enhanced with contrast
Second mri (2015), previous lesion no longer has contrast enhancement, suppresses on FLAIR, new focal area of T2 and flair hyper intensity but it doesn't enhance with contrast.
Already had lotsa blood tests (and have apparently ruled about many other things already, eg. RPR, TPHA, ANF, ANCA all negative). Thank goodness needles don't bother me :)
I spotted the undiagnosed forum, hadn't looked there yet.
There are factors in MS inflammation and nerve damage. When you have inflammation you have symptoms related to the inflammation. When the inflammation dies down the symptoms related to it go away. Sometimes steroids make the inflammation die down sooner and the symptoms go away. Inflammation can last a long time. Steroids do nothing for the progress of MS. MS. If symptoms are caused by nerve damage then they will not go away. You can have nerve damage with no symptoms prior. The only way to tell the difference is if the symptoms do not go away in time.
I have had double vision since an attack in 1965 that is nerve damage. I had muscle spasm in my arm that went away that is inflammation.
Usually with optic neuritis you would see red as pink. It changes color saturation so you see the color but washed out or much lighter.
After having optic neuritis they can see it from then on on a MRI or an eye test where they look at the eye.
Hi Sally - Having to try and sort all this stuff out can be a pain in the a*s :-)
I a bit confused about your doctor roster. You have seen 2 GP's? Have seen more than one neuro?
Collecting multiple opinions can do more harm than good. If you go back to Doc A and tell her that Doc B said it was X, you risk alienating both. When I was a diagnosis in process I saw many doctors. But they were sequential. Once I decided a doc couldn't help me I moved on and never went back.
I'm not sure where you are, or what kind of insurance you have. If you can, I would seek out a neuro that specializes in diagnosing and treating MS. There is enough to your story that merits investigating MS, rather than dismisses it.
One question I have about some of your results is about your LP. It says that o-bands were found in your CSF. Was there any mention of how many and if they were you unique to your CSF, meaning not also found in your serum (blood) sample drawn at the same time as your tap?
As to the title question...
A relapse is generally defined as any new or worsen old symptom that lasts more than 24 hours. For my own purposes, I tend to be a little more liberal on the time front. If something has gotten worse over the course of about a week I start to pay attention.
This leads to what level of recovery can you expect. No no knows :-) The level of repair is entirely individual. You may have complete recovery from a relapse related symptom, you may get partial recivery or your symptom may be permanent, If it is MS you likely end up with a mixed bag.
I have not had a relapse inf 3 1/2 years. The extreme fatigue, 24/7 double vision aand profound muscle weakness that defined my relapse responded rather well to 5 days of IVSM. I do have some symptoms that appear to be around for keeps. No enhancing lesions in 3 1/2 years but I do have ongoing symptoms.
Only time will tell :-)
I've only got 1 GP, she is the one that sent to to the neuro in 2010. The neuro sent me to an ophthalmologist (work at same hospital). My GP is referring me to a new neuro (after seeing him again in 2015) because she couldn't even understand what the neuro says the management plan for me is.
After my latest MRI, I saw the neuro for all of maybe 5 minutes in the waiting room where he told me "everything looks fine on my latest MRI" but he said about waiting for the radiologists report, I called for follow up, but never heard anything further. I then asked for my latest report for my GP.
Upon seeing my letter, I saw there has been another lesion sometime during 2010 and 2015. I could have had a relapse during the last 5 years, because I have had numerous problems, but I was kept in the dark about possible MS and what to expect so wouldn't have known to go back to the neuro.
With regards to the o-bands, regarding how many, I've no idea, I copied from the neuros report, and he doesn't say. As far as I know, that is from the LP only, I'm not aware of them doing any further blood tests for that.
I want to get copies of my bloodwork from the hospital for then, so then hopefully I can find out.
Regarding the relapse question, that's the thing, from about Oct 2013 I started having extreme fatigue. I basically was feeling pretty good, except for my continual moaning about my eyes bothering me, then boom, just TIRED ALL THE TIME. Was for months, then would feel more energetic and I would make up for the downtime then exhausted and kept cycling like that.
Been having double vision issues since that time as well as ringing in my ears. But all of these things come and go. Also started having stomach issues and these strange feelings that I thought was maybe a heart attack.
Long story short, ER visit, said not a heart attack, suspected gastritis, put on PPI, wasn't helping, which then took me off to a gastroenterologist. Found erosions in stomach (ulcer) and hernia, put on different PPI for 6 months.
Had all sorts of difficulty when on the PPI, and during that time, the all over tingling started.
So yes, haven't quite known what is what lately and could anything have been a relapse.
What I would just love to know is when something IS nerve damage so that you can just "ignore and move on".
But I guess that is wishful thinking.
I thought that the initial steriod IV is meant to try halt the progress of MS, in addition to relieving inflammation.
Do you know *if* tingling can perhaps be nerve growth? I know when I had a serious cut on my hand, and the area was numb, the doctor had told me how long it takes for nerves to grow. I had shooting sensations for months on my hand but once the pain stopped the area eventually had sensation returned.
Even the neurologist does not know if it is inflammation or nerve damage. They treat it as inflammation at first.
Steroids only relieve inflammation. I was diagnose in 2009 and I have never been on steroids for MS. For some people they do not help, some people they help greatly at the time, and some have rebound where they work while you are taking it but symptoms come back worse.
They use steroids for anything with inflammation. Brain tumors, Lupus, cancer, poison ivy, and allergies. It is symptom relief in all of these.
Tingling in MS is not nerve regrowth it is misinformation from the CNS. You can get tingling nerves, squeezing, cramps, burning, stabbing, vibrating, tremors, and shocks. Numbness to is the misfiring of nerves.
Neurologists are cerebral beings. Some are not good at explaining things. They either forget that we do not already know or they think an explanation is not necessary. I ask a question and mine starts talking to his resident in medical terms. I have to say hey doc I asked the question and I can't understand what you are saying. Also they do not like emotion. Many will write you of as mental if you get emotional. Also mental means I do not know what you have in dr. speak.
MS is not the only illness doctors do not know how to diagnose. I spend all my time with doctors. I had my first MS attack in 1965 before MRIs and when neurologists were sure children did not get MS. It took until 2009 to be diagnosed. Soon after I started with all these new symptoms. They blamed it on MS. I saw all kinds of specialists. It took years but it was cancer. They do not know much about my cancer either. They will see something on CTscan say it has always been there. Then when it gets bigger they say oh that is the cancer. Or they see a lymph node and say oh that is cancer. They do more tests and it is a lymph node. We think with all the machines they can see more but half the time they are guessing.
I had one neurologist tell me I was going to die and there was nothing he could do. Then he called me and said it is MS.
They do not even know what MS is. When you are diagnosed besides disease modifying drugs to slow progression ( which do not treat symptoms) they treat you with the same medications as before you were diagnosed. There is no hurry to be diagnosed so neurologists take their time.
So then its possible that some symptoms will never go away?? My daughter has had numb and weak hands for four months. steroids didnt change it. She is about to get on Copaxone. So if the nerve damage is done (lesions on her c-spine) then that probably wont get better? is that right? Thanks.