Hi: I was diagnosed with Hughes... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Hi

M_Hem profile image
9 Replies

I was diagnosed with Hughes Syndrome about 18 months ago following tests after a TIA. I am now struggling with other illnesses which I have never had before! I have had Pleurisy, then eye problems, then infections and have now got another lung infection. I have always been well before, could any of this be due to having Hughes Syndrome? I don't really have anyone I can ask.

Thanks for any replies in advance :)

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M_Hem profile image
M_Hem
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9 Replies
Manofmendip profile image
Manofmendip

Hello and welcome.

We are not medical professionals on here, so we cannot give you an opinion on the matters that you ask for advice on.

A couple of questions that may help us to help you:

1. Where are you from?

2. You say that you have no one to ask but who is managing your APS?

Dave

M_Hem profile image
M_Hem in reply to Manofmendip

Hi Dave,

Thanks for your reply.

I am from Bury, near Manchester and I have been discharged from the specialist. I just have to go and get my INR checked regularly.

Should I still be seeing a specialist?

Michele

Manofmendip profile image
Manofmendip in reply to M_Hem

Hi Michelle

Many of us have have regular checks with an APS consultant or registrar, to ensure that medication is correct and appropriate to our current condition.

I see that my colleague, Mary, has given you the link to the charity's list of APS specialists.

Keep in touch with us all.

Dave

M_Hem profile image
M_Hem in reply to Manofmendip

Thanks for the help and advice Dave, I am finding the site very useful and will be a regular visitor from now on.

Manofmendip profile image
Manofmendip in reply to M_Hem

That's good.

Nice heritage railway station you have in Bury, with a great pub attached too. :)

Dave

MaryF profile image
MaryFAdministrator

Hi and hello, firstly where are you located, this is important as we do have a list of recommended specialists in the UK, and if not in the UK, I/we will still try to endeavour to help. If you have trouble with your current medical provider I will endeavour to try and help you through and out the other side. MaryF

M_Hem profile image
M_Hem in reply to MaryF

Thanks MaryF,

I am from Bury, Lancashire which is 11 miles out of Manchester.

Michele

MaryF profile image
MaryFAdministrator in reply to MaryF

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

MaryF

M_Hem profile image
M_Hem

Thanks for your reply, it's good to hear that things should get back to normal from someone on here.

I know exactly what you mean about putting everything down to Hughes Syndrome and do try not to even consider it most of the time. I think, probably like everyone else I'm not used to actually ever having to take time out to get better from anything! I think that comes with being a parent :)

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