Could I have Hughes syndrome??

[Svd80]

Hi all,

I have come across an article in a magazine and the woman described an illness that she had suffered from for a long time.

Hughes syndrome.

I have had all the symptoms for years myself.

I every so often also have episodes that I call- my funny turn.

Which I get a tingling (déjà vue) usually on the right hand back of my scalp which goes along my neck, then I basically seize up.

My face will go numb, I can't speak but can hear all that goes on around me.

My eyes do their own thing and I am basically paralysed.i can't move my legs or arms or hands.my hands actually clean house up and the paramedics couldn't open them neither.

This can last for up to 20 minutes.

Then the paralysed state eases and now and again it will come back. Which I think are mini strokes!!

I have tinnitus and a nystagmus also I suffer from an svt.

But my funny turns even my neurologist couldn't tell me what it was??

I have all the symptoms for the Hughes syndrome?

Help, anything would help to see what it could be?

[Svd80]

I forgot to add on my post above, that my breath goes very small and I can't get a good breath and I can't swallow very well, as my tongue feels a tonne weight.

I have a cold sweat also and my skin goes very blotchy, my fiancée says???

Svd80.

[MaryF Administrator in reply to Svd80]

You need to also investigate your Thyroid, which often goes with Hughes Syndrome, or without it so to speak. A thorough doctor will also look at your vitamin D, B12 and Iron, (Ferritin).

MaryF

[MaryF Administrator]

Hi there and welcome, we can't give you a medical diagnosis, but the starting point is to read this charity website we are attached to thoroughly, and then also to do the blood tests, do the tests in a hospital setting, the samples are best tested quickly, rather than left lying around for collection in a GP surgery. If you are in the UK and you test positive, then we have a list of recommended specialists.

1. hughes-syndrome.org/

2. hughes-syndrome.org/about-h...

3, hughes-syndrome.org/self-he...

Also if it looks likely, getting your GP to also look at the website. Let us know how you get on. MaryF

[Manofmendip]

Hi and welcome

I agree with everything my colleague, Mary, has advised you.

Let us know how you get on.

Dave

[Lure2]

Hi,

We have found here that the Neurologists do not "get" what APS is about - too thick blood. When it is well and enough anticoagulated we can fell normal again.

So you have suffered too long already - try to get an APS-Specialist as soon as possible

I guess you are in England ? Read also "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms of this very rare illness. I have it in pocket.

Best of luck from Kerstin in Stockholm

[Lure2]

Hi again,

Perhaps it would be better if you took the blood-test for APS first of all. Iven if your test shows zero you can have APS. You can be zero-negative. Several members on here are negative but have all the symptoms.

Thats why it is essential to consult with an APS-Specialist who knows what to look for. He knows all the different symtpoms of APS. Was it your Neurologist who suggested you had ministrokes or yourself? Are you on any anticoagulationdrug?

If you get pain in your breast and difficult breathing, go see a doctor at once.

Kerstin

[GinaD]

I have APS, but what struck me from your post is that the blotchy skin, difficulty breathing and tongue issues reminds me of the way I feel when I'm having a severe allergy attack. Do go see someone.

I have multiple drug allergie. When I take something -even something I've successfully used before -I must notice if my blood pressure crashes, my vision goes, my tongue swells, I become hoarse, and rashes appear. Then it's Benadryl and maybe epi pen time.

Do get your symptoms diagnosed.

Be persistent. The answer is out there.