@eleanorrigby 

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eleanorrigby

Undiagnosed - what do people think

Hello, I am 30 years old. When I was 18 I had optic neuritis, diagnosed swiftly in eye casualty. The symptoms were horrific with complete blindness in the eye and awful pain with eye movement requiring me to wear an eye patch. The ON healed quickly and you would now never know there had ever been a problem so I have made a full recovery. I had an MRI at the time which was clear and so I was discharged with the neurologist stating I was in the low-risk category for future MS development. Since then, it has always been in mind. Eight years after that episode I started developing an aching behind one eye. The pain would come and go, lasting days, disappearing for weeks, returning for another week, disappearing again, etc etc. After two years of this coming and going problem, I saw an optician. The optician could not detect any issue so I was referred to an eye specialist at the hospital. They conducted tests and also couldn't find any explanation and did an MRI of my eyes and brain. This MRI was done 10 years after my first one. They said it was definitely not ON and in fact the scan was completely normal. I was subsequently discharged. Since then it stills happens now and again (4 years on) but not so frequently. I should add during this time I was on high dose prednisolone for my Crohn's disease and it had no impact whatsoever on the eye aching so perhaps it is not inflammatory. Now for the past 5 months I have had tingling/altered sensations in my right calf. Each day the sensations are in a different place ranging from the top of my shin, middle of the back of my calf, back of my ankle etc. Again these weird feelings have come and gone and come and gone over the past 5 months. The sensations may last a couple of weeks, then disappear completely for three weeks, then return for another 3 weeks, disappear, return etc etc. It doesn't get any worse each time and is always from below my shin to my ankle (never thigh or foot and never left leg). I am feeling despair about all of this. I feel like the only explanation is MS. (I'm tested regularly for B12 due to my Crohn's and it's always normal). However, would a diagnosis benefit me? I am only 30 just finishing my PhD and was hoping to get a job where I could work abroad for a time. I'm already taking 50mg of azathioprine for my Crohn's, which may help the MS if I also have that. Are these symptoms typical of MS? My ON case came on suddenly, was severe, and then gradually improved and disappeared. These symptoms are just niggling and keep coming back after disappearing, disappearing again and then coming back again.
@eleanorrigby

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@Stumbler

@eleanorrigby , I can see that this ongoing situation is becoming frustrating. That is completely understandable. And is a situation that a fair few members have had to negotiate. MS is a notoriously difficult condition to diagnose and there are strict criteria that have to be satisfied before the diagnosis is made (https://www.mstrust.org.uk/a-z/mcdonald-criteria). The damage caused by Optical Neuritis (ON), as well as a similar ocular condition, Neuromyelitis optica (NMO), can usually be seen by Opticians. So, at the present time, there seems to be little available evidence to point to an MS diagnosis. Unfortunately, the symptoms of MS can present in other conditions too, which doesn't help. Keep a symptom diary (https://www.mstrust.org.uk/a-z/diary-symptoms) to record these unexplained events, so that it can be referred to in future appointments. Once you can compile a short, concise summary, go and have a discussion with your GP and go through this summary.