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Any ideas of what's going on!!!!!

About 13years ago I started having problems with my left eye ,the only way I could ever explain it was has if I was going crossed eyed with blurred vision and not being able to focus on to anything the pain was horrible…this would happen maybe 2-6 times in the course of a year… Then 3 years ago whilst I was in the company of my wife and a good friend I got a really bad pain behind my left eye when my wife looked at my eye the pupil had taken over my whole eye it was completely black … My wife phoned the opticians and they wanted to see me straight away they checked my eyes out and I was then referred to a eye specialist who then referred me to have an MRI scan he also requested I saw a neurologist… The report on the MRI scan showed an enlarged pituitary gland . Then one morning as I got out of bed I collapsed as I didn’t have any feeling down my left side for several days after I felt weak and tired and three weeks later my wife finally persuaded me to go to the doctors later on in the day I received a phone call asking me to attend the local hospital which I did I had to have another MRI scan which showed white matter they seemed to think I had an Tia . By the time I see the neurologist it all seemed to get muddled up with the eye problem and the Tia … The other problems I’ve been having are forgetfulness , extreme tiredness , balance problems, burning sensation , bowel and bladder problems , itchiness , skeletal pains , bad cramp in my ribs which could be what’s known as the bear hug , really bad muscle spasms which I’ve been able to video so I can show the neurologist what is going on in my body . Last week I see my eye specialist who done a visual field test which wasn’t a hundred percent on my left eye I showed her the video of my body movements , and explained once again the problems I’ve been having when my wife mentioned the possibility of it being ms her reply was I don’t think your wrong there .she said she would get on to my neurologist as they need to pull their finger out and give me a diagnosis asap, I have had numerous tests done for ms where half are yes and half are saying no also on my last MRI scan it showed more white matter than the last one , Please any ideas, Phil.

Hi Phil,

I’m sorry you’re having so many worrying and unexplained symptoms, but it’s good you’ve been referred to Neurology.

The one thing I would say is that MS lesions tend to have a very characteristic appearance on MRI - to a trained eye, at least. So the fact you’ve had two - or is it three? - MRIs but none of these provided compelling evidence of MS tends to weigh against that diagnosis. An enlarged pituitary has nothing at all to do with MS, but could cause eye pain if it gets sufficiently large to cause pressure. I think it can cause vision problems too (my sister has a pituitary tumour, whilst I have MS - we often moan about similar symptoms, but are told both of us developing “brain” problems is complete coincidence, as the two conditions are unrelated). Quite a high percentage of the population has an enlarged pituitary, and this is symptomless in many cases, and only detected incidentally, on investigation for something else. Sadly not symptomless in my sister’s case though.

I also don’t think MS would be confused with a TIA.

You need to be aware MS diagnosis is governed by very strict criteria, so it’s often not a case of neuros simply “getting their finger out”. If there’s not enough evidence in support of an MS diagnosis, then they’re not allowed to diagnose it, full stop. I suspect this must be what’s happened to you: for whatever reason, the evidence doesn’t quite stack up, or there’s still room for reasonable suspicion it could be something else. MS can only be diagnosed when ALL alternative explanations have been ruled out.

So those could be some questions to ask, at your next appointment: “What makes you doubt it’s MS? If it’s not MS, what else are you still considering?”

What other tests have you had, exactly, and which point to MS, and which don’t? There are actually not an awful lot of tests that can be done for MS, as it doesn’t show in the blood. Common ones are MRI - which you’ve had (several times!), lumbar puncture (sometimes called a spinal tap), and visual evoked potentials (VEPs) which measure you’re brain’s response to visual stimuli, and can be used to deduce whether there’s any delay, which could point to inflammation of the optic nerve.

I am diagnosed on MRI and symptom history alone, as I never had a lumbar puncture, and VEPs came out normal - so didn’t help diagnosis.

BUT my MRIs were fairly textbook stuff. They didn’t come out looking as if they might be anything else. I think that is what enabled my neuro to be quite decisive about diagnosing.

Tina