Rheumatologist today

[ccurrey79]

Finally the day has arrived and im off for my first rheumatologist appointment. I was diagnosed with Aps in 2006 after recurrent miscarriages and have only been referred on as i have joint pain my dr cant explain ( he doesn't think its linked to my Aps). Not quite sure what to expect or what to ask, can anyone give me a little advice

thanks

Claire

[Manofmendip]

Hi

Good luck.

Where are you from?

Dave

[MaryF Administrator]

Hi best of luck... you can always say how useful you find this charity website: hughes-syndrome.org/

You could always mention that some with Hughes/APS are doing well on Plaquenil for fatigue and explain also that you understand that the target ranges for INR are set higher if on anticoagulation. If you have a moment or too, jot down your history and also symptoms in bullet points to prompt you. Let us know how you get on, where are you located? MaryF

[ccurrey79]

Thank you both for your replies, Im from Accrington in Lancashire, i will pop back and update later

Claire

[MaryF Administrator in reply to ccurrey79]

Ok, there is a list of specialists who deal with Hughes/APS in your area, in case they are not aware: hughes-syndrome.org/self-he...

MaryF

[ccurrey79]

Well i've come back more confused than ever. To begin with it seemed positive as he aapeared suprised i wasn't taking aspirin and started telling me i should be on it, then he turned it around and decided that he needed to do blood tests and only if these were positive would he recommend treatment. I had all the testsat St Marys London on the separate occasions as needed and they have confirmed I have Aps, I really don't know what to do

Claire

[MaryF Administrator in reply to ccurrey79]

If he needs to do his own set of bloods then fine, however you can always get hold of your old blood tests and any old letters and scan and email them over to his secretary's email address marked for his attention. He is likely to stick you on baby Aspirin and probably needs to come to a decision regarding anticoagulation or Plaquenil. I am sure it will be ok. When you do write, keep it short, and just say you are enclosing past paperwork in case it needs to be on your file at his hospital department. These things take time sometimes. Keep us posted. MaryF

[Lure2]

Hi,

Very good answer from mary!

I woud like to know if you have more symtoms than joint pain?

Best wishes form Kerstin in Stockholm

[ccurrey79]

Thank you Mary, I will write to Prof Regan and get my records to forward on. Other symptoms i have are fatigue, visual disturbances, dizziness and headaches (not migranes)

I just feel as though the drs think im wasting their time

[Lure2 in reply to ccurrey79]

Hi again, I have gone through that. I had those symtoms but not so much ordinary headache but acute stabbing pain for a couple of seconds. We are all different but also very alike with our symtoms, You have a diagnose and probably a Rheumatolog that knows APS. Do as Mary says and do not feel for a second that you are wasting his time. You are not!!!!

I wish GOOD LUCK. Kerstin in Stockholm

[ccurrey79]

Thank you, i have just sent a request off for my records and have also spoken to the project co ordinator of the LAPS research study i am involved with, i can see this is another big hill i have to climb

Claire

[MaryF Administrator in reply to ccurrey79]

Well done... up you go... and it will probably be smaller than the last hill. MaryF x

[VCP12]

Sorry to hear of your struggles and frustrations. I was diagnosed with APS in 2011, after the stillbirth of our first daughter. I was fortunate to have a team of doctors (high risk OB, general OB, and a Hemotologist) that set me on a great plan- aspirin & 2 Lovanox injections daily for my third pregnancy (I miscarried our second baby). I was able to make it to 32 weeks with our daughter, who is strong and healthy at 18 months

I realized that I was experiencing a lot of joint pain and fatigue a several months ago, and after many tests and three rheumatologists later, was diagnosed with Lupus, and am now on Plaquinil.

Be diligent in your treatment, don't take no or the first response as your only answer. Had I, my husband and I wouldn't have our daughter and I'd be suffering gravely from physical and emotional pains from APS and Lupus. I pray you receive the answers that will help your treatment.

[Lure2 in reply to VCP12]

Well said !.

Best wishes to you from Kerstin in Stockholm