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Graves?

Buckley123 profile image
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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

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Buckley123
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pennyannie profile image
pennyannie

Hello Buckley

Well, it probably makes sense to have a full thyroid blood test undertaken including the anti bodies and then you'll know whether of not your symptoms are Graves related.

Graves is an auto immune disease and the antibodies tend to attack the thyroid causing many different confusing symptoms and Graves can also attack the eyes.

At least then you'll know and can discount or read up further of this condition.

I have read that everybody's journey with Graves is different, no two cases presenting the same way, so understandably, it s not well understood or managed in mainstream medical school, affecting approximately only a quarter of 1% of the population.

Buckley123 profile image
Buckley123 in reply to pennyannie

Thanks pennyannie for your kind reply I seem to be able to pick out symptoms from every autoimmune. I’d like to think I’ve had the thyroid panel done as I’ve had extensive blood work done however I went to London lupus and he pointed out 8 different tests I hadn’t had done and that was just for lupus and aps so I guess I have to check I know my standard thyroid was negative xx

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