I wonder if you can help me at all I seem to keep drawing a blank.
This all started in September last year 2 months after my mother passed (47) from ms.
My eye started to behave weird pain on moments blurry went to opticians and he said rrpd ( I think basically my pupil was not contacting properly )asked if there was any ms or neurological disease in the family ( panic) I was sent to morfields eye hospital and they could find nothing.
My muscles started to play up twitching jolting I had headaches and eye pain my face swells one side also.
No one would take me seriously because my mum had just died.
In the end I paid for a mri of the brain and found white matter lesions and diagnosis of ms.
Went to a ms specialist who then disagreed!! ( fantastic ) and said maybe lupus .. but all or sarcoidosis all bloods were negative ana extensive blood work lumber punter negative eveocs eye test spot on . Pet scan showed inflamed lymph nodes in my neck and ovaries swelling. I have a very dry swollen tongue and dry eyes temp issues and flushing of the face I often feel ill like flu is coming but it doesn’t
I then went to a lupus specialist in London lupus center he suggested aps which my Nan has .. but my results are negative. He did say he thought I was hyper mobile.
My neurologist now think it’s physio somatic from watching my mum pass away and the Lesions are from ‘silent migraines ‘
My eye sight isn’t worse but deformed more blurry so I went for another eye test and within 4 months my eye muscles have deteriorated and I have been given prisms.
My neck also feels weak ie when I wash my hair in the bath I really have to strain to pull my neck up .. my swallow feels weird like I have something in my throat and may face has so much pressure on it.
Really I can go through most autoimmune and pick something from all criteria but nothing that confirms anything.
I’m a little lost please can anyone give me some suggestions
I do get pins and needles hot ones two in my neck and shoulder and scalp.
I have bone marrow changes in my hips also and I hAve low vit d and I have 3monthly injections of b12
I also want to add that I actually don’t think it’s ms and I’m not worried if it is I’m only worried that I don’t get the right treatment
My mums ms was a bad case but that was her fight and she done me proud but this is my fight
Thanks for reading
Age 29 xx