Hi Kerstin!

Hi Kerstin!

Hi Kerstin! So sorry I didn't know I was in Clair's site so sorry! Now I know! I have been recently diagnosed with APS and also have another blood problem, very rare PV (polycythemia Vera! I've had it for over ten years! I DX'd myself and waited 2 yesrs b4 telling my HEMOTOLOGIST/Oncologist that I had it! My other parts of my blood not affected by APS, are involved in PV! Plasma,Hemoglobin, RBC & ME WBC! They say my blood so thick it's like sludge! I am thinking of finding a Rhemotologist because as a child I HAD JRA( JUVENILE RHEUMATOID ARTHRITIS) Do u think there is any correlation between the 2? I do suffer every night wit terrible bidyaches! Legs arms and ribs! I don't sleep due to pain! Do any of you who havAPS Suffer with that! I'm also ver fatigued and need to rest every other day! I'm a robust 62 year old and very independent and no matter what I've been thru I always snap bak! In July I had a lifesaving stomach surgery that went undetected by DICTOR! I knew because this was tummy surgery # 6 or 7! I have never been same since! I also lost my left leg in this past January and recovered in record time! Got my prosthetic leg on Feb 17& on Feb. 18 walked up 20 steps! Very determined to be me again! I walked 10 blocks a day and began to run just wen Stomach Surgerypopped up! Since I havnt been same since is it possible that the Surgery triggered my APS? God Bless Y'All on this site! Thank You for your feedback! I think you may have saved my life!!! I've been treated extremely badly by MEDICAL OROFESSION, and friends and family just don't get it cuz they don't want to get it! Since I'm so proud and independent I won't ever ASK FOR HELP! It they can't see or choose to put blinders on, I certainly won't ask! They know better! I'm just totally OVERWHELMED with all of this! The ANGERtiwards the Medical Community has consumed me! I must let it go! Good Luck to all and I pray for all of you!!! Thank You in advance! Happy Holidays! Here in USA is Thanjsgiving next week! I sure am thankful for ALL IF YOU!!! GODSPEED!!!

8 Replies

  • Hi Debbweb,

    Is this a 62-year old APS-sufferer? You just look marvelous!!

    I do not remember if I have asked where you live? I guess it was in the UK but where and which doctor diagnosed you? Did he know about APS? I guess not.

    Try to get a Doctor who understands APS (a Specialist) and a Rheumatologist might know what other autoimmun illnesses you may have. When you are well anticoagulated this illness is treatable but it never goes away. Some people have relatives who has got it also. It is a very rare and undiagnosed illness and there are very few doctors that know APS. Friends and relatives may have difficulties to understand. I am on Warfarin since 4 years and selftest.

    Hope you stay on here and also hope you like the book.

  • Hi Kerstin! Thank you ! That was me one month b4 I lost my leg! I am from the USA! Long Island, New York! Yes I have a Hemotologist for 10 yes. Now! Like I said I have another extremely rare blood disease cald Polycythemia Vera/PV! It's another sludgy thick blood problem but it affects the other parts of the blood from APS! I don't look like that anymore! In Les than one year I've lost 30 pounds and a leg due to APS! My whole life has changed and been interrupted! I'm very unhappy to b this sickly! Thx for ur response!

  • Hi, I think surgery triggers APS. Yes! After my op for Hyperparathyreodos I became worse.

    When you read Sticky Blood by Kay Thackray you will understand why the eyes are involved. We often have microclots and small TIAs and the eyes and ears are connected to the brain. Every time I had a Vertigo or doublevision or lost my vision on my right eye for some minutes, (before I started Warfarin this happened) it must have been a tiny clot. I had a lot of them. After Warfarin - no more!! Still tinnitus, changed short-memory and if my INR goes too low I get very bad balance when walking and bump into things. The tiny clots are not seen on a scan.


  • Hi Kerstin Thank you/ Manga Tak! Lol that's Danish for many thanks! Not sure of spelling! I go see my eye doc on Wednesday! In June I was in a bad car accident! A young girl driving on wrong side of road hit me head on! I got a vitrious humor tear and hemorrhage! It never heal like it was suppose to so I'm just stuck! You did say to check for Sjogrens which I will now tell him I have APS &!asknif I cud be checked for Sjogrens! My eyes are always gritty and I do use those eye drops w/o the additives! I have severe dry eye! Had cataract surgeries and had many complications with simple surgeries! Does that happen too? Simple surgeries becoming Magnified? I'm sure because all else seems to be magnified! I am very thankful to have you Mary Dave and everybody else!!! The Internet is a great thing in some ways! I do have a Hemotologist that I've been seeing for ten years due to other blood disorder! I'm just angry at him for not diagnosing me a long time ago! He shud have no excuses! I am waiting til I stabilize with warfarin and Plavix! These pains must stop and if not I must c a pain management doc! Has anyone u know gone to pain management docs?

  • Hi

  • Hi can't seem to send it sez I need a body???

  • Hi if you want to just reply to somebody, you use the reply section under their post or their reply. If you are writing a new post, yes you have a title and then the body underneath is the text and of course if you click on somebody's profile it gives you the chance to send a private message, you will soon find it easier, don't give up. MaryF

  • Hi again,

    Yes please stay on here. We need people like you with your history of a whole life with APS. You have really gone through difficult things. Still you have a spirit to help others on this site.

    Juvenile Rheumatoid Arthritis must be a Rheumatological illness. We are no doctors here but I have not heard of it together with APS as I can remember. Sounds good that you are looking for a competent Rheumatologist.

    I know others on this site are from the New York-district or near to it and it must not be quite impossible to find an APS-Specialist there. If you like you can put a NEW POST and ask someone and perhaps someone will answer and give you a name who is approved by this Community also.

    You can look at this in the meantime;


    Stay on here and keep well!!


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