Seeking advice on abnormal MRI?

Posted , 4 users are following.

Hello,

This is my first post on this forum. Let me first thank anybody in advance who can offer me any advice or support, as at this time I am feeling extremely low and frightened. I am a 23 year old female with otherwise good heath apart from anxiety.

It all started in August 2013. I woke up one day and my left eye hurt ONLY when I moved it, like the whole eye was bruised from the back or something. I also had a horrific headache on the same side. I put it down to eye ache for three days until it was bothering me that it was still hurting, so I went to the out of hours GP, who immediately panicked (and was kind of rude to me, calling me irresponsible for not coming in sooner) and sent me straight to Accident and Emergency. Here I was checked out and told there was no swelling on my brain etc. and I was experiencing either cluster headaches or migraine and to go home and take Paracetamol and Ibuprofen until it resolved itself. I did this, and the pain wore off after about 7 days. I forgot about it, until 6 weeks later when the same thing happened but in the other eye, and this also disappeared after just over a week. Let me add that I did not notice any visual changes or loss, but by this point I was anxious enough to see my optician who took photos of the back of my eye, did an eye test and told me I was fine.

When the eye pain stopped, I forgot about it quickly after. It happened maybe 5 or 6 times since that August until the present, always in one eye and always disappears by itself, sometimes with a headache, sometimes not. It's happened once and only lasted for about 3 days. I've never noticed any vision loss. Being fairly anxious about my health to begin with, I did the big no no and googled it after doctors told me it was nothing, and obviously I was told from every angle of the internet that it was probably optic neuritis. Panicked again, I saw numerous GPs and none of them were convinced.

This Christmas time just gone, the eye pain came back in my left eye and lasted a week and a half. I was so adamant by this point that it was optic neuritis and that I would develop MS, that I begged my GP to give me a brain MRI. He seemed doubtful but agreed, and I had it some weeks after.

My friends and family and even doctors and opticians told me that I was just experiencing eye pain occasionally due to tired eye muscles, fatigue or stress. A week ago I got a letter telling me my mri results were back and to see my GP. I went along the next day and this is what he told me.

"There is no evidence of MS found in your results... However, there are some changes. I'm referring you to a neurologist as the report says there is something which 'strongly suggests' a demyelinating (spelling?) plaque. This could be something or nothing. There may be further tests"

At this point I was reduced to tears as it felt like my worst nightmare was coming true. I have my neuro appointment in a few weeks but I am terrified. Has anybody had any experience like this in their pre diagnoses? Could the doctor be right about it being not MS? Could it be something worse? I really don't know what to think and it feels like my anxiety is taking over at the minute sad

1 like, 5 replies

5 Replies

  • Posted

    A demyelinating plaque can either be indicative of trauma (have you ever had a head injury?) or MS. Your symptoms sound like classic optic neuritis to me, but that normally involved changes in sight. Recommendations:

    1) get a neurologist/doctor who will listen to you and offer help

    2) get a lumbar puncture. They need to look for proteins and Oligoclonal bands in the fluid.

    3) keep a diary of any unfamiliar symptoms. How long they last, what they are and how they affect you.

    With blood to rule out any other possibilities, they can at least suspect MS if they can find lesions, proteins and O bands. Hope you get answers

  • Posted

    Thank you for your reply. I have never had any head trauma. Yes, seeing neurologist in a few weeks. Part of me doesn't want an answer sad It feels completely surreal.
    • Posted

      Believe me when I say knowing is half the battle. That closure is needed
  • Posted

    Hi, I was diagnosed with MS about 8 years ago. After having an MRI but I would say that at the time I had numbness in my legs and fingers. I also had eye problems with zig zag lines that were intermitant. My MRI confirmed I had secondary progressive MS.  But I also had evoke potential tests, which were part of the diagnoses. I have meet many people with MS and some of them were your age. But they had relaspes and attacks before being diagnosed.  Try not to worry (i know that's easy to say) but just keep onto your doctor and neurologist to confirm what is actually causing the problem.  Good Luck Will

  • Posted

    dont give up you know your body better than anyone else. if you hit a closed door open another one til you are heard and taken seriously

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