Just putting it out there again

[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

[KellyInTexas Administrator]

I have read through your posts and see you were diagnosed with hyper mobility by Dr Kaul at London Bridge.

This is known as Ehlers -Danlos. It is a one of the auto immune connective tissue diseases. There are many sub sets of it.

It may be one of a few auto immune diseases you have going on at once, or it may be in isolation. Sometimes stress can make our symptoms worse, but cannot cause the illness itself.

Here is some help for you.

The Ehlers-Danlos Society-Europe

Office 7 35 37 Ludgate Hill

London ECHM 7JN UK

Phone: [phone]

ehlers-danlos.com

[e-mail]

There is an article I would like for you to read about the spine and vertebrae, and problems that can arise if they are hyper mobile. Cervical spine can become unstable, discs can slip, etc.

I have ehlers danlos as well, and our almost 28 year old daughter might. She just had an mri and slipping discs are a problem with no structural problems to explain why. The neuro spinal surgeon wants an auto immune condition ruled out due to such a ,” strong familial profile” .

In case the direct link I’m enclosing is broken, I am now enclosing the title of the article. ( which was put on the the ED society I just gave you the phone number for.)

“ Neurological and Spinal Manifestations of the Ehlers-Danlos Syndrome for Non Experts”

bit.ly/2lzlQU

I very much hope this might help you.

Texas Greetings,

Kelly

[Buckley123 in reply to KellyInTexas]

Thanks kelly I appreciate you taking your time to reply to me xx

[HollyHeski Administrator in reply to KellyInTexas]

Thanks Kelly - thats a really interesting article and in plain English so easily understood.

[MaryF Administrator in reply to HollyHeski]

Yes a great article, and quite a few people on this forum also have EDS, funny enough I have two friends who have EDS and first one then the other also found they had Hughes Syndrome/APS, however neither have Hughes Syndrome particularly badly, but their EDS is worse, one diagnosed quite young and the other recently. These autoimmune diseases come along like buses, all at once, thanks for the paper. MaryF

[Buckley123 in reply to MaryF]

It is a good read

I’m going to start taking a baby aspirin a day see how things go that’s what doc kaul suggested as my bloods came back negative.

It’s playing on my mind a lot my son was born with a few issues one was his hand not forming correctly and his bowl I was told this could have been a interruption of blood flow at the time now it’s dismissed

Have you heard of anything like this ? X