Last reply 4 months ago

Hi and HYN everyone. I’ve been on here for a while checking for info but thought I’d finally post to tell my story and hopefully get some advice. April ’18 I ended up in st George’s London after suffering a hemiopia. CT scan – told I had a brain tumour then an MRI diagnosed with auto immune ADEM. Multiple brain lesions. Spine is clear. Lumbar puncture positive for O bands. IV steroids for 3 days and discharged. My vision improved a lot but suffer with glare/internal lighting and a bigger blind spot than usual. For a while I didn’t have any other symptoms but recently I’ve had debilitating fatigue, stiffening up of fingers and really intense tingling (mainly at night) all on the RHS of my body. My questions are..has anyone heard of MS starting with a hemiopia? Also I’ve checked the McDonald criteria and as far as I can make out +OG bands plus lesions is enough for a diagnosis. Should I be banging on doors? My Neuro pretty much told me to get on with my life but easier said than done when in limbo for 9 months and feeling like symptoms are occurring. Thanks in advance

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4 months ago

@jamesl , don’t you just love it when these medical professionals try and bamboozle us with their clever terms? I had to look up hemiopia, which I believe is the same as hemianopia, just to confuse us further. So, is hemianopia a potential symptom of MS. Well, yes it is :-

Then, a brain tumour! You must have been having kittens!

And then Acute Disseminated Encephalomyelitis (ADEM), a condition that is “sometimes (rarely) diagnosed in adults.”

I am NOT medical, but you have to question the diagnostic processes that were followed in your case………….

These latter symptoms of fatigue, spasticity and neuropathy are all symptomatic of MS, amongst other conditions. And could indicate further neural activity.

Personally, I’d return back and discuss the matter with your GP with a view to getting referred to an MS Specialist, who would be able to rule MS in or out. Being located in London, you are spoilt for choice in finding an MS Specialist.

4 months ago

Hello @jamesl, this seems like an unusually horrible path you’ve been on. I agree, I think you need to go back to your GP; you could start by asking what his/ her understanding is of what you have been told, or what letters he/she has been sent. You could ask to be referred to a different hospital. Make sure you have a clear, time stamped list of all the symptoms and appointments you have had to date. You need to make a pest of yourself; sadly, we have to be our own advocates in our little corner of the world. Good luck, please keep us updated on how you go…

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