Neurologist, cardiologist and others

[hanbur]

Hi there

I have my appointment with the cardiologist tommorow. I was refered by the rheumy on diagnosis of hughes. But since then I've been getting chest pain and left arm tightness. My blood pressure was measured last week at 170/110 and apoarently my cholesterol is 7 (thought to be due to genetics). There is a history of heart attack in my family when ppl get to their 40s. I'm 32. I'm nervous.

I also saw a neurologist this week. He said I have chronic migraine and an essential tremmor. I also have left sided weekness but he didn't think that was neurological. Hes ordered mri scans. He said he doesn't think the neurological symptoms are due to hughes.

I keep being told that my apl g and lc are only slightly raised so shouldn't cause these symptoms. My question then is what is causing them? It's scary. But I'm being refered to St thomas's soon so I hope they will have some answers.

Wish me luck for the cardiologist tommorow!

[MaryF Administrator]

HI, it is essential that you see a specialist who understands the condition Hughes Syndrome/APS entirely. Often unfortunately neurologists are very very dismissive as are some GP's hence the recent debate in the House of Lords: publications.parliament.uk/...

You have a family history that needs to be noted, also test results and the strength of those results is not everything! Make sure if are nervous that you take your most articulate, and trusted, friend, relative, colleague or neighbour with you to any appointment. Also write out your history in short bullet points and symptoms and your family history. I have in the past actually bought books by Professor Hughes and sent them to disbelieving medical staff, along with new papers, or things such as the transcripts above, all sent by email to the secretary's of the consultants marked for their attention. MaryF

[hanbur in reply to MaryF]

What an interesting link! Thank you

[DannyBoy1 in reply to MaryF]

Great post, Mary.

[Lure2]

Hi, I will certainly wish you good luck tomorrow when you see a Cardiologist!

First of all I do hope your Rheumatologist knows about APS. We need an Expert on this illness!

I have gone the long way and was diagnosed several years ago for neurological issues like TIAs etc. We have learned from own experience that the Neurologists do not "get" what this illness is about - too thick blood. We need anticoagulation to stop all micro-embolies or clots to different organs. My microembolies or clots were never seen on Scans. They are too tiny but they do damage.

I had like you very high (sky-high) bloodpressure (high blood pressure goes with APS in some cases) and now I have Pulmonary Hypertension and are meeting several doctors also heart/lung -specialists. I am now on Warfarin and selftest and my bloodpressure is OK today but I still need bloodpressure drugs like before.

They have done several Ecochardiographies with doppler.I am glad you are meeting a Cardiologist tomorrow. Ask them to do an Eco with doppler on you.

Hope I have not frightened you because APS is treatable with wht right Specialist (s). I am sure they will now take real good care of you. Stay with us here and read about APS. hughes-syndrome.org/

Best wishes from Kerstin in Stockholm

[hanbur in reply to Lure2]

Thank you. It is reassuring to have an idea of what to ask for re. Doppler and to hear your experiences