Sticky Blood-Hughes Syndrome Support

My New Year hopes & dreams

I would be happy if this is the year that the desease is understood by most Dr. That this is the year the don't tell a patient, usually female, that therr is nothingwrong with u! That drs. Around the world take a moment to consconsider the possibility that there just might be something wrong! The year Dr.'s will say. I have heard about a somewhat newly discovered desease that fits some of ur symptoms. The yr they say lets run some blood work before I decide there is nothing wrong with u. Before I decide u are just looking for attention or u just can't handle the big bad world and u should just stay home, quit ur job because uccan't handle this big strong hard world. The year APS peeks interest in unfamiliar Dr.'s. The year they say. Its ok. We are going to figure this out together! The year the last person is told some BS diagnosis such as spastic leg syndrome and fibro is all thats wrong and most of that is in your head. The last year someone is sent home by the 6th specialist and told not to come back unless they are blind and in a wheelchair! The first year all Dr.'s are educated on this desease st least enough to test you and send u to a specialist! The first year we are beleived by all dr's. The first year nobody gets sent home to continue having TIA's' CVA'S' Strokes and heart attacks. The year everyone is listened to and treated before they are disabled by this disease!

To a year of wide spread education on APS!

Happy New Year Everyone! Lets make sure this is the year that not only saves lives but protects the quality of life!

Plz forgive my typos and for give me if I repeated myself as my memory is so bad I often say the same thing twice in a conversation even if worded a little differently the second time. Happy New Years to all.

6 Replies

Wishing everybody a good and healthy New Year! MaryF

1 like

You can yourself spread info about APS to the Doctors so they will send you to a Specialist. This is a fight; having APS!

You have got very good advices from our Admins and members the last months and why not ask your husband or your daughters for help and perhaps take a video when you get your Strokes to show to the Doctors (advice from APsnotFab). Let them know the facts about APS. I know it is difficult in the US.

You must do something about your situation. Do not be afraid to ask someone for help. Perhaps follow you to the A&E if you are afraid of hospitals.

Hope you will get a good year of 2017 with the right treatment!



I have been diagnosed since 2009 It just didn't have a name until a couple yrs ago. I spoke with my GP about everyone saying I meed higher INR she is fine with me increasing my dosage, which I have done. My last INR was 4.1. I also have had a couple days that I didnt feel so horrible but I haven't had 1 that I felt ok. But I also haven't had another TIA. That's good. If itsbas good as I can get im om with that. Just can't keep having TIA's. Im not gettn any smarter. Lol Thanks Kerstin. I am doing my best to follow the advice I receive on this site. I can not find a specialist anywhere near me. But when I can make a 4 hour(one way drive) and an additional 3 hour wait I will go see my Hemotoligist. He diagnosed me and seems to be a great dr. He is just hard to get to. But he CARES, HE LISTENS AND HE FIGURES OUT what is going on. He just can't be my regular dr because of the distance and expense. My PCP is good at beleiving me when I tell her something I have learned and that we should try. She doesn't seem to study the disease but she takes my word for it.


Thats sounds very good I think. An INR of 4.1! Is that taken in the vein? Hope you could keep it there as we are very sensitive on a sudden drop.

Also you have a Doctor who cares, listens and figures out and who also diagnosed you. You do not have to see him every month (I see my Specialists once or twice a year) but still you can call him or your PCP could also call him if necessary.

And the LMW Heparin shots are so easy to take if you ask me. I am not even bruised. Too old perhaps.

I am worried about your pain and that you must be on Morphine for it. Ask them to take bloodsamples for all the things Mary is talking of and also for Sjögrens and SLE. Perhaps you could need Plaquenil besides Warfarin but I do not know of course. I just go on what I hear from others.

Hope that the Warfarin steady and high enough will make you feel a bit better as you have had no TIA lately. I will keep my fingers crossed that it will continue like that!!



Thank you! I hope o can keep it stable. I already asked about LUPUS and Sjogrens but local rheumatologist said test were negative. So I don't have them. He doesn't consider it possible to test negative for the antibodies and still have either disease. Even though both syndromes are often diagnosed with negative blood work.


You can still have Sjögrens with negative tests. Schirmers test is one and I think that is for dry eyes (I have done that) and also dry mouth can be tested on the salive.



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