Confused and desperate!

Hi all. I have been lurking in the background, in limbo as per! My story so far: 2011 started having ‘dizzy/off balance’ moments (never fallen though) Headaches/head pains/migraine Enlarged pupil/eye pain Clear CT scan Referred to neurology Seen by ENT and Opthalmologist Adies pupil diagnosed Offered MRI by neurologist, but symptoms got better, so I chickened out! April 2013 (approx 18 months later), symptoms returned, but new symptoms too. Wet patch to hip (not bothersome, just strange) Brain fog (still have this) Vibration sensations(still have this at times, but not as bad now) Numbness/pins and needles Silly memory problems, getting words mixed up (not sure if this is just me being ditsy)! Felt a bit jittery at times Joint pains to elbows, but shooting pains down inside of lower arms (still have these) Lower legs feel wet Constipation/diarrhoea Vision problems i.e. Depth perception, eyes don’t feel like they are tracking together Fatigue Referred back to neuro in June last year, but ended up in A&E twice before I got to see him in October. All neuro obs ok, but think I had abnormal plantar reflex, as doctor kept doing it so much I had sore feet! Positive babinski?? Neuro wasn’t convinced there was a problem, and said it was probably anxiety (I was very anxious, but had waited months for my appt)! Did bloods ECG, and had 24 hour urine collections x3 (x5 if you count the extra 2 I had to do as they only got results of the first 1)! Referred for MRI, and to audiovestibular medicine MRI of head and neck clear Neuro said probably migraine Visual vertigo diagnosed Been for vestibular function tests, who did find abnormal eye movements, lateral and more importantly vertical, as they said this could indicate a CNS problem. Not imagining it after all! The last year or so has been hell. Symptoms coming, slowly getting better, then new symptoms arrive and back to square 1. These last couple of months or so have been much better. Able to get out more, but still not sure how I will feel on a daily basis. Waiting to see neuro in September again. Just wondered what you thought if my symptoms. Not seen anything related to pupils, and just wondered whether this could have been optic neuritis?? I have never lost vision, but it has been strange at times. I do have a dry eye at times too. Recently found out vit D low, and possible type 2 diabetes, despite good diet, normal BMI etc. Think that’s enough of my woes for now. Not saying it is MS, I have also been down other routes, as I am sure most people do. Not sure what I have forgotten. Just very confused, frustrated annoyed that neuro wrote me off on 1 consultation, and knackered! xxx


Yes could be Aides if both eyes affected or Afferent Pupillary Defect (APD) OR Marcus Gunn pupil if one eye is larger than other.

Afferent Pupillary Defect (APD) or Marcus-Gunn pupil is a condition of the eye where the pupil doesn’t dilate appropriately to the level of light reaching it. This will often result in one pupil appearing larger than the other (relative afferent pupillary defect - RAPD). This person with APD is often unaware of it except by looking in a mirror.

There are many causes of APD including Optic Neuritis (ON), glaucoma and optic nerve tumor. In multiple sclerosis, APD, is usually associated with damage to the optic nerve resulting from ON.

The reasons why afferent pupillary defect occurs with optic neuritis are complicated and involve the neuroanatomy of the visual pathways. Put simplistically, the eye in which the ON has occurred acts as if it is in a lower light situation than it really is and dilates more so that it can let more light hit the retina.

You require an MRI of all your CNS (BRAIN and SPINE) as it seems you have some form of Neurological problem. This is a doctor writing about his diagnosis of MS

On a lighter note if you watched a programme on TV called ‘The Killer Bees’ (yes alright I watch crap but it was that or Germany; France bigger crap) one of the main characters was a woman with MS. She said that awful wrong phrase “I’ve got a terminal illness,” No; no; no MS is not terminal.

Life is terminal; I’ve been diagnosed 42 years; led a fantastic life so far done loads from sparing with Mohamed Ali to biking from John O’Groats to Lands End.

Limbo Land is the worst place to be; change your Neuro for a more receptive one with a bedside manner.

Good luck


Thank you soo much for your reply. I knew I would get more sense from the real experts, than from the medical profession! I am a nurse myself, but obviously when it’s happening to you it’s kind of scary. My anxiety level has been through the roof for the past year, but I have managed to keep up with my job, only missing a few days late last year. Sometimes I wonder how on earth I managed at work. Giving advice to others, when I just felt like collapsing in a heap most of the time. Still, feeling a lot better than I was, but really really scared that whatever it is will come back again. I just don’t feel like me anymore. Adies pupil was diagnosed in early 2012, in my right eye. All the opthalmologist did was to look at it with a slit lamp, that’s it. It is more noticeable in low level light conditions, as the pupil enlarges. In normal light it looks the same as the left. I should also say that over a period of time, it does slowly almost get back to normal, although sometimes It almost gets better, then regresses again. Should it do this? I thought Adies pupil was a permanent thing, which mine doesn’t appear to be. I don’t know why the neurologist only requested a head and neck MRI, except for the reason he thought I just had anxiety at the time. This neurologist replaced the one I saw in 2011, who was really nice. Not sure how it will pan out if I ask for a spine MRI, but after reading posts on here, I was starting to wonder if it would have been beneficial in the first instance! Once again, thanks for the info. It’s so helpful just to talk to someone, as my poor family have suffered more than me since all this started, with my feeling so ill, anxiety, not going out and about etc. Like I said previously, am not sure what my issue is, but people like you are surely inspirational to others that may cross a similar path. Thank you