Mid diagnosis mother had ms dose mg cause brain lesions

[Buckley123]

Hi all

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

Brisk reflexes

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

Thanks for reading

Jade.

Age 29 xx

[blondie120]

Hi , sorry bout your mum i was 42 when my mum died suddenly , that was 10 yrs ago i never got over it , just dulls alittle, but as for getting diagnosis for MG you need a single fibre emg basically a fine needle popped into side of your eyelid for 15/20 mins with small shocks , sounds awful an it does hurt but its like 99% poss for diagnosis so you’ll know for sure . My bloods were neg nobody believed me till i had that test now im on meds an i still feel rubbish but i have a disease name an not an illusion . I wish you luck hunny .

[Buckley123 in reply to blondie120]

Thanks so much for your reply xxx

[lighthousepoet]

Hi Jade, I feel so deeply for you as from what you have said the symptoms strike a chord. I have had Lyme disease for over 6 years and it it this condition that has helped me acquire MG. It would be frowned upon for me to give my personal details so I will give you a link to a fb support group that I am a member of facebook.com/search/top/?q=.... I will look for you there. For the moment I would like you to search for the Horrowitz questionaire on your search engine. Complete it and it mey help you decide that Lyme disease could be the cause of many of your symptoms.