Hi, I am new to here but would appreciate any advice you can offer. I have had a few random problems over the years (weakness, tremor and tingling in my arms, hands, legs and feet on my right side especially which I never really bothered going to see anyone about), trigeminal neuralgia on the right side which comes and goes (saw 2 neurologists - one of which claimed it was a spasming muscle in my neck - been 6 years so doubtful and one who was not sure whether could be nerve damage of some sort or a weird form of migraine but no real tests done).
3 weeks ago had the joy of having my right eye pretty much give up on me after hurting for a couple of days. To cut a long story short - it is optic neuritis - pretty sure as was accepted onto a clinical trial about optic neuritis and they have now run all their tests (VEP, MRI, Visual fields, etc, etc) and not kicked me off. They explained the link between this condition and MS and the MRIs taken as part of the trial can be used by my doctor as well. I now have about 3 weeks to wait for the results and am rather worried - going from coping fine to really freaking out as I am a teacher and already my students have suffered by the few days I took off to get my eye looked at and for the tests to be run although I am managing to teach fine with partial vision.
I know making big decisions is probably a bad idea when things have flared up like this but think if it is MS then I may well have to reconsider my career. Any advice or help you can offer would be greatly appreciated as I really am a bit lost at the moment - I have put off tests to confirm or not the diagnosis of MS since the trigeminal neuralgia appeared as I was too scared but have done it now and am finding waiting for results very difficult.
Hi Sarahmaybe
Poor you - it sounds like you are having a very tough time.
I had ON last October, it’s a horrible experience and one I wouldn’t wish on anybody.
It sounds as though (and it may not seem like it now) you are actually rather lucky to have gotten onto the ON clinical trial. It certainly sounds as though it has sped up testing and things for you.
The wait can be agonising and I am currently waiting for the result of my last MRI (brain and spine). I’ll get those results in 4 week’s time (5 weeks after the MRI). It is just awful having to wait.
Someone on here said to me that it is ok to worry. How you handle things is how you handle them. There is no right or wrong way.
Try not to think about too much big stuff, ie career path, until you know what’s happening. And don’t worry about those few days you weren’t there. It wasn’t your fault and I am sure everyone understands.
Sending you ((hugs)) and best wishes
PG xx
Hi PG,
Is it really so long to wait on results? :0(
Hi controlfreak
I think it depends. That was the earliest my neuro could see me to discuss the results. I’ve had the results two weeks after an MRI scan before, so it varies.
It does normally take at least a couple of weeks as you have to wait for the radiologist to review your scans as well as your neuro.
PG xx
Every day its waiting on the post…and again today, none…grrrr x
I think the wait on MRI depends - apparently my hospital is having a few problems and the wait for the MRI results to go to neuro is 6 weeks, then god knows how long until I find out… Considering my ON happened in December, I can’t believe I am still waiting really 
:0( its so sad to read on here so much pain, frustration,and worry. We are all having to be patient patients!
How long to get results of things like MRIs depends a lot on the doctor who ordered them, whether he writes to your GP and copies you in or whether he prefers to see you in person, how quickly you can have an appointment etc.
My first neuro wrote to my GP but didn’t copy me in and the letter he wrote was 1 sentence long and didn’t actually say anything meaningful. My GP said he couldn’t work out what the neuro meant - not a good thing! It was 6 months between me having the MRI and seeing the neuro again, despite ringing his secretary several times.
My current neuro wrote to my GP within about 3 weeks of the MRI and sent me a copy of the letter, as he’d said h
e would. This letter explained in plain English what the scan showed, what that meant and what would happen next. The neuro saw me again after the other tests had been done and he had the results back - LP early December, saw neuro late January. With Christmas in the middle, I felt that wasn’t a long wait really.
Thanks people,
I guess I am lucky that hopefully is not so long to wait for results thanks to the trial. However the results do then have to go to my opthalmologist who may then refer to a neuro before I can have them (or so they have just told me so may be a longer wait than I thought). Some days I cope ok and others it all gets on top of me which is normal I suppose but have a few other things happening in my life that don’t help (both parents ill - mum keeps collapsing with blood pressure probs and dad waiting on his own MRI results for cancer). Very grateful for your kind replies and thanks for the hugs PG - they are much appreciated. Sorry to those who are also in my postition and really hope you don’t have to wait too much longer - being a patient patient is hard. It does help to know that other people understand what you are going through (even if I wouldn’t wish it on anyone).
Hi i had optic nerve problem in my right eye took a month to recover i have had ms for 9 years now i hope ur results dont take too long all the best gabbyx