Haematology appointment

[vine55]

Hi, I finally have an appointment with a haematologist and I'm worried that he will be one of those doctors who don't recognise APS as a condition. What is the best way to approach this?

[MaryF Administrator]

Hi there, try not to worry, write your medical history down in bullet points and do take the link to our charity website along and any medical papers you think would be useful. Also a list of current and past symptoms in points, as it is so easy to forget detail on the day. All the best. Mary F x

[Tonkawoman69]

Hi Hun, My hematologist was brill. I know what you mean about some consultants though as I have had to complain about a wrong diagnoses plus the rudness from this rheumy consultant.But I have now got into St Thomas Lupus centre to discuss my Hughes and Lupus and get right advice. I agree with mary take as much bumf as you can . I have a built up file of doctors appointments, symptoms, test and consultants appointments. The more in the picture they are the better. If you dont get the answers the fight to see someone who does listen as this silly rheumy consultants had delayed my treatment and made me feel like I was making it up. Someone is out there to listen just sometimes you have to go round the houses to get there.

Good luck.

Andrea x

[KarenOR]

Don't worry take a friend or family member with you, if you are stuck they can step in and say how they see you and the things that have changed about you.

I take a friend with me to all my appointments, then I have back up to what I am saying, it is useful for a doctor too as they get a fuller picture of you.

[Hidden]

Haematologists are usually very well versed in APS, problems can arise occasionally with rheumatologists and often with neurologists. Good luck

[Suzypawz]

Hi, I hope you get the answers & support you need with this.

All you can do is write everything that you have experienced up to now, symptoms, worries, fears...& hopefully he will be clued up a little on APS.

Be very persistant & if you don't feel you are getting anywhere you need to tell them....nicely of course!! x

[vine55]

Hi, Well I finally had all the tests and they have come back negative. I am really happy about that but have a few niggling worries. The consultant made it quite obvious that he didn't really believe in "The Syndrome" and said "in any case we would not treat it" What I want to know is what is causing the symptoms I have? Migraines, muscular problems, numbness in hands, breathlessness, rash on hands - I could go on. Of course the biggest worry is having another pulmonary embolism. He did say that I would be prone to having another one. Why?? I know that I am not right but I do not want to appear to be someone who reads symptoms on the internet and suffers from every one of them. It's hard to get the balance right between safeguarding my health and accepting what "experts" tell me.