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

[KayHimm]

You have been through so much at a very stressful time. It sounds like the doctors as yet do not have a definitive diagnosis. My two thoughts are to see an APS specialist, whose opinion would be valuable concerning seronegative APS, and to not dismiss the migraine issues. Neurologists have explained to me they do not really understand what migraines are, but they cause many symptoms other than headaches. They cannot be sure with some of us whether it is a migraine or TIA. The migraines can be associated with other conditions also. Hope that is helpful. K

[Buckley123 in reply to KayHimm]

Thanks Kay for your reply x

Yes it’s been a very stressful time and I am aware stress can cause some of my symptoms but something is definitely wrong.

I see dr kaul in the London lupus and he was asking about the aps He said if anything I would look into huges but my neurologist isn’t keen as my blood are negative.

He did tell me however to possibly take a baby aspirin a day. Which I will do also.

Do you know if it can cause bone marrow change?

Thanks for your Help xx

[KayHimm in reply to Buckley123]

I don’t know about the bone marrow change. Hope you get some answers soon. K

[Buckley123 in reply to KayHimm]

Thanks kayHimm me to thanks for your support x

[KayHimm in reply to Buckley123]

You’re welcome. Keep us posted. When you go back to the lupus specialist, he will likely ask you if the aspirin has been helpful. K

[Buckley123 in reply to KayHimm]

He won’t see me again because he only sees lupus patient and he doesn’t think I have it. But I do see a neurologist but going to look into getting a remy xx

[Lisalou19 in reply to Buckley123]

I’m still surprised at your outcome at London Bridge, D Cruz has diagnosed many others on here and not with lupus. He uses his knowledge to run a full blood screening for autoimmune diseases. I really feel for you. X

[Buckley123 in reply to Lisalou19]

I know I had already had a lot of bloods done and he did suggest a few more which again where negative

Not really sure what’s going on mate bloody nightmare xx

[Lisalou19 in reply to Buckley123]

I do feel for you. Do you get obvious visual symptoms? X

[Buckley123 in reply to Buckley123]

I also didn’t have another 600 for bloods and as he wouldn’t see me on the nhs because he was only seeing lupus on the nhs now.

I’ve spent all my inheritance in scans and blood work and appointments seems all for no further forward cx

[Lisalou19 in reply to Buckley123]

Where do you live? X

[Buckley123 in reply to Lisalou19]

Harefiled Middlesex outskirts of London xx

[Buckley123 in reply to Lisalou19]

Visual symptoms is blurry visions on and off and black spot in my eyes mainly floaters xx

[Cas70]

The loss of your Mum seems to have triggered something off. I wish I knew an answer but I do think KayHimm is right see an APS specialist. Best wishes

[Buckley123 in reply to Cas70]

Hi cas70 I have been told it’s not uncommon for a stressful event to trigger a autoimmune ana I have stepped in it so very quickly as I am scared of being like my poor mum

She was only 47 and spent 7 years in a nursing home I see her everyday she suffered a lot and the day she died wasn’t peaceful you see she was a fighter in the end she had respiratory failure which wasn’t nice to watch xx

[Lynocat in reply to Buckley123]

I believe stress/shock/trauma triggers a lot of things. I had Raynaud's, dry eyes and the occasionally aching hips when under the weather but was generally fit and healthy. Then five years ago my father passed along with other trauma within 2weeks and then my mother a year ago and I have suffered since then with periods of fatigue and join pain like episodes of flu with respite in-between when I just felt ok rather than better. Hormones play a big part in this too as I had early onset menopause and was on various forms of HRT which they now are lowering my dose as I they now discovered I have thrombophilia! It never rains but it pours eh! I have also been treated for rosacea since my 20's which came and went in severity regardless of what I did, along with migraines which started out as just nausea which apparently is a form of migraine - who knew! Anyway, in the past four/five years I have seen a rheumatologist, a shoulder consultant, a spine consultant, a respiratory specialist, a nerve specialist, a hematologist, and back to the rheumatologist. Along with GP's, (always different) and a very good physio for acupuncture. Back to the rheumatologist in three weeks... Sigh.

[Buckley123 in reply to Lynocat]

Do you mind me asking if you had a positive ana ? I’m asking as I do not have anything positive blood wise just symptoms.

My. Muscles twitch like crazy all over my body and my limbs jolt it’s very irritating 😠.

I’m sorry to read you have had such a unpleasant experience xx

[Lynocat in reply to Buckley123]

Nothing from all the blood tests has proved anything. Rheumatologist says that it's unclear but in small % of people there is no positive result. I have restless leg syndrome along with the occasional twitches but nothing as bad as jolts. I Have been on hydroxychloroquine for the past four months but have chosen to stop this week due to the headaches which were awful. I have brought my appointment forward by a month to discuss with consultant alternatives.

[Buckley123 in reply to Lynocat]

Headaches are awful I feel for you I hope you have a good appointment.

What’s restless leg ? I’ve had muscle twitches for around 7 months everyday some worse then other xx

[Lynocat in reply to Buckley123]

nhs.uk/conditions/restless-...

[Buckley123 in reply to Lynocat]

Thanks my legs jolt in the day to or is it just at night ? X

[Lynocat in reply to Buckley123]

Mine is mainly at night and tbh, it bothers hubby more than me. If you read the NHS link, it seems you can have it all the time.

[Buckley123 in reply to Lynocat]

I see thanks lynocat you have been most helpful

I hope your okay and your headaches kindly due one ☝️ x