Confused what to do

New diagnosis and before diagnosis
1

Hi all,

I have had a lot of help from this group before. I had finally come to terms with my diagnosis of FND and am doing the work that’s needed to help myself on this journey.

However something was bugging me about wording on my letters from my neurologist so I thought I would ask for my medical records to have a look.

I have now received them and after going through them I noticed my head MRI had 1 lesion which ok is just one so nothing to concern myself about right? Also they did not tell me about this lesion. And then I looked at my spinal MRI and they also found 1 lesion in the C7 part of my spine. The letter I received on this said no significant lesions and that was it.

I guess with only 1 lesion again nothing to worry about. However my mum was a nurse and always told me to look up things on NICE guidelines and there it says if you have 1 lesion with more than 2 symptoms then you have to rule out MS

However I have 2 lesions and more than 2 symptoms and they have just put me under FND

Should I request they test the spinal fluid to rule it out completely?

Also the hospital I am under is not the best as I have had a few misdiagnosis there that have made me have serious treatment after. But since it’s my local hospital I am always sent there.

I’m not sure what to do. Advice from anyone here would be extremely helpful

Thank you

2

Perhaps the only thing to do is to repeat all your above points to your neurologist and ask for clarification- discussion especially in light of the NICE guidelines?

2 Likes
3

Thank you Hank for replying, I guess I knew to do that but was wondering if this had maybe happened to other people. I’m not great at asking for things myself.

If I was with my children or my husband then I would be asking the questions but when it’s for me I get a bit anxious and quiet and don’t like to rock the boat :pensive: