My eye pain is back and loss of vision (for the 2nd time since July) both GP and optician said they couldn’t find anything wrong. Have an appointment with the eye clinic tomorrow - hopefully something might show up.
Have had an MRI on my back (only) as this is where my symptoms started,waiting on results. have a feeling a head MRI is next. Have just had a load of bloods done and all clear.
One of my more embarrassing problems is my body is constantly shaking twitching escpecially my head, infact it’s more like a rocking feeling - and it never stops! I was given some beta blockers but they don’t seem to work.
Pins and needles still in hands and legs, left hand has started going numb.
I feel like I’m going insane I feel like I just want to scream at everyone and just stay in bed and not see anyone. I know you guys understand but I really don’t feel like anyone else does, I feel miserable and alone.
The fault is in your Optic Nerve and can only be identified by a Visual Evoked Potential.
Visually Evoked Potential (VEP)
This test measures the speed of the optic nerve. The patient has to focus on the centre of a “TV” screen on which there is a black and white chequered pattern. Each square in the pattern alternates between black and white at measured intervals. The patient wears a patch on one eye for a while and then on the other, so that the speed of both optic nerves can be measured.
85-90% of people with definite MS and 58% of people with probable MS will have abnormal VEP test results.
It’s so frustrating when you know there is something wrong, but tests results are clear. It does drive you nuts!
We all have suffered many symptoms, with no explanation. Mine have been going on for nearly 6 years now, and still not really getting anywhere. I have arguments with myself now to make sure they are really happening!!
I wish they would hurry up and find a way to diagnose us without all this waiting!
Hopefully something will show up soon.
Just wanted to let you know you are not nuts, you are as normal as us!!
I had a brain MRI which was ‘normal’ and then an Occular or Orbit MRI which found a lesion. Presumably it did not show up or was overlooked on the brain MRI because the lesion was quite small, whereas the Occular MRI scan revealed it because it is more focussed on a smaller area. I wonder how often this might happen and just to say that if you get a brain scan come back clear, you might want to push for this other type of scan.
Thanks guys, went to the eye clinic today who assured me my eyes were fine, the did spend alot of time checking everything at the back of my eye, dilated my pupils and nerves etc he thinks I have muscle weakness in my left eye, so a huge relief I don’t have ON. My Back MRI came back clear a minor bulge between L5 and L6 which he said would be causing the neck aching.
My shaking is still pretty bad, I’m not sure what will happen now, Back to the doctors next week. It’s pretty frustrating though for us all.
But it always reasures me that I’m not the only one.
Thanks guys, went to the eye clinic today who assured me my eyes were fine, the did spend alot of time checking everything at the back of my eye, dilated my pupils and nerves etc he thinks I have muscle weakness in my left eye, so a huge relief I don’t have ON. My Back MRI came back clear a minor bulge between L5 and L6 which he said would be causing the neck aching.
My shaking is still pretty bad, I’m not sure what will happen now, Back to the doctors next week. It’s pretty frustrating though for us all.
But it always reasures me that I’m not the only one.
Hi Reebe, so sorry to hear of your problems. My eyes have been giving me hassle since January when I first became ill. I don’t have ON but I do have paralysis of the Cilliary muscle which means that focusing is difficult. I didn’t have this before the attack. Nearly all my original symptoms have calmed down and I am now able to walk but still have blurred vision in my left eye all the time with the occasional double vision. I have terrible tremours in all four limbs and my head shakes. The Neuro calls it NO NO because it shakes from left to right as opposed to up and down. I have to say that the Beta Blockers really help but if they are not working for you, I also tried anti-depressants which help with tremors but these didn’t suit me. I am not depressed, they were just trying to find something to suit me. Fatigue is still a big problem for me!!! Still not diagnosed and keeping an open mind… I hope you get the tremors sorted at your next visit, they are sooo exhausting!! Big hugs xx
