Sticky Blood-Hughes Syndrome Support
8,096 members8,335 posts


I just got to say, no doctor told me to get tested for Sojerns! I just went to my eye doc said I had APS & had symptoms of Sojerns & wanted to be tested! I told Dr. ERKAN and he just looked at me and never said another word about it! Just to ask my eye doc if I cud go on Plaquinil! My Hemotologist never said anything and only reason Dr. ERKAN tested me for RA he said was cuz I mentioned I had it as a kid! I guess we Gota be our own doctors and diagnosticians! Yes it's very annoying to go and they just tell u they're taking blood tests! God forbid I ask what blood tests they took! I don't know till this day if they ever Took a thyroid test? I will ask because I think wen u close the door you just become a statistic in there eyes and your forgotten! They ask u questions like have u lost ur hair and u hope they're Guna do the thyroid test! You forget to ask because you've just been told 3 times that you're a very complicated person with a complicated medical history! You already know that without him reminding you three times and getting u overwhelmed! So I'll just go and ask the next doc what I want to be tested for and just say one of my doctors suggested it! It's what I did to get tested for Sojerns and it worked! I've come to the conclusion that they're not only anti-social they have absolutely NO COMMON SENSE! That's the trouble with doctors ~~~ BOOK SMART, but no COMMON SENSE!!! I'm just angry at being my own secretary, my own diagnostician and keeping track of what they do when I'm paying big bucks for them to do it!!! I know welcome to your world! I've been here for far too long and I'm Guna start getting pushy and nasty cuz then they perk up! Sorry to get on this soap box!!!

6 Replies

Well, the pieces of the jigsaw are nearly in place now, all the correct medication and information, onwards and upwards as they say. MaryF x



As I have said before hold on to dr Erkan! I always ask my Doctor for a copy on every bloodtest they do. You must have a Dr who is responsible for your treatment. That Doctor will remit you to those other who he thinks you need. You must trust dr Erkan and show him that you trust him also. Specialists do not like people going to a lot of different doctors. Ask dr Erkan about your teeth. Talk to him.

We know that dr Erkan knows APS and also RA and Sjögrens and can take bloodtests for Thyroid etc. Doctors like to be trusted. They are human beings. This is a very special illness and so very few doctors know about it. They are not groing on trees.

You can test Sjögrens in two different ways. Either in a blood taken or by tears and salive. At least we do that way in Sweden. The bloods you know are not always reliable

Please take it easy now ........... There is only one dr Erkan in the US.




Yes I agree Kerstin! I will speak to him! Thx for the advice! Yes Mary onward


best to develop a calm, pleasant relationship with doctors.....they are not trained to deal with patients who are motto "go for being grateful"you are in the best hands.....but our responsibility as patients is to be a part of the process


another personal the US the medical profession is so cautious when they feel "under attack" by a patient because they fear law suits....and I am in the profession and unstable patients will lash out and sue....even when not my opinion

"getting pushy and nasty" will be counter to your own interests

1 like

Hi Luisa! I've NEVER gotten nasty with my docs! I only say things on here because I've been treated badly by the medical profession all my life! One cardiologist told me it was in my head, till I flatlined twice! Even then I just said well I guess it wasn't in my head! He apologized! I may sound like I'm fed up, but that's why I come to this site! Thank you for the input! Yes they're sued here, but I too have been in medical profession for almost 40 years now and watch my tongue!!! Lol...Have a great day and thx again! GODSPEED


You may also like...