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Hughes Syndrome APS Forum

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Do I need a specialist?

Patientlyoptimistic profile image

I have been diagnosed with APS following a stroke at age 40. My care is managed by a stroke consultant at a local hospital. I have minimal change disease of my kidneys (linked to the immune system) and I’m wondering about gluten intolerance. My problem is that I don’t think my consultant knows that much about APS and I wonder if I ought to see a specialist. I’m in North Lincolnshire, in the UK. Does anyone know of any specialists in or near this area or do I need to travel to London? I’m immunosuppressed so don’t really want to use public transport if I don’t have to.

17 Replies
lupus-support1 profile image
lupus-support1Administrator

Yes, you need a specialist in autoimmune diseases. What autoimmune disease has caused kidney damage? I would see a specialist in systemic lupus erythematosus.For more information, see lupus-support at HealthUnlocked!

healthunlocked.com/lupus-su...

Or contact me privately.

APS can exist with SLE.

With good wishes,

Ros

Thank you for your reply, I don’t have kidney damage, I have minimal change disease, they don’t know what causes it in people but my renal consultant said the only link they have is with the immune system so I wondered if it is linked. I was negative for lupus on my blood results but positive for APS

lupus-support1 profile image
lupus-support1Administrator in reply to Patientlyoptimistic

There isn’t a specific blood test for SLE. The “lupus anticoagulant” blood test is a complicated test for clotting. It’s name is very confusing.Nevertheless, I would ask to see a lupus specialist ie a rheumatologist who understands SLE etc I am NOT suggesting you have Lupus but I don’t think it’s good enough to just accept that your kidneys have been attacked via an autoimmune condition without establishing what is going on. Patients often have more than one autoimmune condition. So please don’t leave it when I am sure a specialist can monitor your condition.

On the right you will see a list of APS doctors.

With good wishes,

Ros

Sorry I’m being dim, is there a list of specialists as I can’t see one?

I have been a daily reader of this site for.... I don't know how long, but I think for around 15 years , and I do not recall reading about a "change disease of the kidney". So, yes, you need a specialist. I am way across the pond in West Virginia, but If you do not hear a response from this site, try searching the web. APS can be managed, though finding the perfect medication for each individual can be challenging, so an experienced doctor is crucial.

Thank you, it is minimal change disease that I have, not sure if it is related to APS or not, it causes recurrent nephrotic syndrome and I’m currently on immunosuppressants because of it

baba profile image
baba in reply to GinaD

kidney.org/atoz/content/min....

Yes, you do need a specialist. APS is a complicated disease, and you have some other issues too, a specialist can help sort it all out. In my case, once I saw a specialist, it made a big difference for my health. I can’t help with names, being in the US.

That’s great, thank you. I’m not sure how I find a specialist

There was a list, by area, of consultants people recommended, but I can't find it today. MaryF can you help please.

That would be fab if there was a list. I don’t fancy travelling unto central London being immunosuppressed

MaryF profile image
MaryFAdministrator in reply to baba

Sorry for the delay with my response been away. ghicworld.org/ghic-consulta... MaryF

baba profile image
baba in reply to MaryF

Thanks for all you do. Holly had replied.Happy new year!

HollyHeski profile image
HollyHeskiAdministrator in reply to Patientlyoptimistic

Here is our list -

ghicworld.org/ghic-consulta...

Do your research for your area, speak to your GP and ask for a referral.

Also put a new post on here, asking for others to recommend someone in your area- word of mouth is good.

I live in the US....sorry I can't help you but I hope you find an APS specialist. Good luck..

MaryF profile image
MaryFAdministrator

Hiya, you do need a specialist who understands Hughes Syndrome/APS and Lupus, you may find this list useful: ghicworld.org/ghic-consulta... I hope you get some answers, we all learn of each other on here, which is a supportive forum! ps gluten intolerance and Coeliac Disease is not that unusual with autoimmune disease, I have this and have been gluten free for years, not cured me by any means but taken away a massive amount of irritation to my system and also improved my gut. MaryF

Hi. I was seen at Castle hill hospital and diagnosis there. Hope you get help

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