Hi Everyone,
I posted on here a little while ago about my first neurology appointment being on 25th November following an episode of Optic Neuritis which began 5 weeks ago.
I went back to the Opthalmology clinic yesterday just for them to check up on my vision and see if it’s improved and I saw a consultant. This consultant then went to the head consultant who reviewed my notes and examined me. He asked some questions about other symptoms (I have a numb back of my right leg, buzzing sensations in legs and feet and sometimes a sensation of warm wet patches on my thighs and arms). He has now referred me for an urgent MRI which should be in the next ten days. He said that at the age of 27 I wouldn’t be getting ON for no reason and he suspects MS. I have had blood tests done by my GP in the last couple of weeks to look for an ON cause. Everything came back clear, including vitamin B12, however my Folate level was a bit low but not drastically and I am not anaemic.
The ophthalmology consultant has said it will be good for me to have the urgent MRI as it means I will have the results before I see the neurologist on 25th.
I am very glad and grateful I am being seen so quickly, but with it, it has all happened so quickly I feel as though I have had a ton of bricks fall on me.
Just wondered if anyone else had had a similar experience? The urgency is making me very nervous. I am aware however that I am very lucky to be seen very quickly, it’s just all taken me by surprise.
Helen xx
Hi Helen, no I haven’t but just to say {hugs} and good luck!
I haven’t had the same experience as you, but I ended up being hospitalised due to my sudden symptoms (I had never had any before). So my diagnosis (firstly told MS then CIS) was very quick. It was a bit of a shock to say the least as I thought I had a trapped nerve!
hi…glad you are having an urgent MRI…it’s not unusual when a person gets On…I had the same 18 mths ago and a head MRI within a week of the ON ESP as I also had oscillopsia in yes at same time…my MRI was clear aside from some age related white spots and my cerabellem has gone concave poss age related but there was a high white spot on left optic nerve…small and the radiologyst missed it but eye neuro saw it when they revised the scan so do make sure the eye dr reviews the scan also… try not to worry in the meantime…the scan itself doesn’t take long and hopefully you will know more what’s what. sometimes a cause for ON cannot be found…but they may want to do blood tests too…just to be thorough…ms is one of a few things that can cause ON…there are about 4 other things that could cause it that are known…but equally there isn’t always a cause specific… I was shocked when they first told me MS could be a cause of mine but equally so could a virus, bacteria or low immune system…but I kept things in context in my mind…I think because of the wobbly vision too they were taken aback when the scan was clear for demylation…the optic nerve is not an area that is easy to become inflamed… and therefore it is always a concern to eye drs when On presents itself ESP in someone of your age,On can sometimes be an early sign if MS but equally having ON does not mean that you will develope MS either… your other symptoms do need looking into also…is your scan with contrast or without? mine was without and I had another 10 months later with contrast and there was nothing new on there… have they advised re driving? I wasn’t allowed to drive but to be fair it would not have been safe for me to… am sure the drs will be thorough and get to the bottom of things…your other symptoms elsewhere may be unrelated or they may be related…am no expert so it’s just a case of waiting to see what they say…they may want you to have a VEP in addition to MRI. this checks the speed of images travelling down the optic nerve to the brain…with ON. this slows the speed down and is a good way to confirm ON … hope this helps and reassures you…try and keep busy in the meantime and stay positive em x
Yep, mine wasn’t sudden as such but by the time I got to neurology, I think I’d have gone to A&E if that appointment wasn’t booked!
Like Puddinglover, I thought I had a trapped nerve, the walking problems weren’t consistent and everything else I brushed off… I had the spinal MRI and then the spinal unit wouldn’t give me the results and I was more annoyed than anxious.
I was referred to neuro (?) and in those few weeks I got really panicky and everything seemed to get worse. I really didn’t have the first clue about MS and didn’t realise having a hot bath might leave me unable to stand etc. Even my spinal MRI made it pretty certain I had MS so it was a shock to me.
I feel like I went around the whole thing backwards, not like the limbo lots of people seem to be stuck in for ages before Dx.
Try not to be anxious Helen, you’re being seen quickly and that’s a good thing. And might not get all the answers so quickly so stick with it.
Sonia x
Hi Helen, coincidently I saw an ophthalmologist yesterday too because of my ON. My blurred vision started in the middle of June and I noticed it whilst out running. I had an MRI scan the same week which came back clear and a lumbar puncture in August because of the other symptoms I was experiencing ( tingling left arm and leg, balance problems, fatigue, numbness on left side of cheek and weakened left handed grip) My Optic Neuritis was confirmed after a Visual Evoked Response test. I have my first appt with neurologist on 23rd November, in meantime he’s requested I have a head and spine MRI scan done which is on 19th. My blurred vision (left eye) is not bad enough to require steroids thankfully but the ophthalmologist seemed pretty sure the problem looks to be an MS related symptom. He said the neurologist would be more helpful in giving me the facts and answers that I need at this stage. I know how your feeling, it’s scary isn’t it, I ran my 4th marathon at the beginning of June and now I’m facing a life changing diagnosis, as much as I need the answers I’m not sure if I’m quite ready for them! Try not to worry and enjoy all the simple things in life, friends, family and the support on the forum have been a great help to me, Best wishes and take care, Lucy x
Hi everyone Thank you so much for all your replies. I don’t have the date yet for my MRI and I suppose I won’t know until then whether it will be with contrast or not. I have had blood tests done but they all came back clear except for the folate (but b12 was ok). My GP didn’t really know what to make of that so has given me the numbers so I can give them to the neuro. I don’t have any issues with walking except my hip joints on both sides become a little out of joint and won’t go back again but I think this because I have gained some weight in the last few months and they’re just protesting! I am trying so hard not to freak out. At the moment I really have no answers and I suppose it’s not knowing that is the main worry for me. I am an information magpie so I can’t leave anything alone. I have no idea of the amount of information I have now read about ON! I suppose I can’t help thinking the worst. I am a 27 year old female so I know my age is in the ‘danger zone’. I am always tired - I can’t remember the last time I woke up feeling refreshed or like I had had enough sleep and I have these other odd symptoms. I know, in my heart, that I do not know what is happening, or what was the cause of my ON, but I am feeling so fearful and worried. I am feeling much calmer from reading all your replies and I really am going to try my best to keep as calm and even headed as possible. I hope you all get the answers and results you are waiting for as soon as possible. Thank you all for taking the time to read my message and reply - I can’t tell you what it’s meant to me to read it all xxx