Newbie

[Ion1]

Hi all,

I am new to the journey of AN. I have had trouble with one sided deafness, facial droop, double vision, voice and swallow for 2.5 yrs. To start with my local A&E thought I’d had a stroke, but ct and MRI was clear. Then they thought functional? migraines? Myasthenia? I responded really well to the myasthenia drug pyridostigmine. Which I am still on. After 2 years I asked my local neuro if I could see a myasthenia specialist as I was not responding to treatment like I should. I had a recent scan (Feb) at Queens Sq, by the new specialist seeing about ? Myasthenia. The scan showed an incidental 16mm cpa mass, favourable to be a AN. However now they have found this tumour, all testing has stopped and I have been referred to Mr Grover at Queens Sq. My first appointment is next year in mid Jan. I saw the opto-neurologist today to see if anything can help the double vision, blurriness and dancing eyes, he said cpa tumours don’t cause it, must be FND. None of the scans have been done with contrast, I can’t ask anyone till next year about a definite AN diagnosis. My GP has prescribed Stemetil to help with the dizziness and nausea. Just feeling a little lost and not quite sure what positive action to take next. I am working with a physio on balance, eye movement and orientation. I plan to follow up this new fnd diagnosis. Any ideas or experience very welcome 🙏 Jo

[Karbob]

Hi jo, you are definitely having a hard time. All I can say is that 1.6 mms is not seen as large, however it's the help with your symptoms that you need desperately. Try BANA, or brain trust, people that have these difficulties tend to be the best at helping. It does seem an extraordinary length of time for you wait to see a consultant. Hope some of this helps. Take care