My GP says he wrote to a 'consultant haematologist' for advice. The reply is 'He feels that APS is unlikely based on previous normal coagulation screen and other blood tests.'
If coagulation screen is normal, does that mean there's no APS? I think he means normal blood counts etc by 'other blood tests'.
They say they won't do further tests.
Specifically, which blood tests were run?
Hi GinaD, I'll definitely contact my GP and get the list - I managed to get a note of the date. They were in May 2019.
I agree with GinaD, you need to find out exactly which blood tests were done, in both the coagulation screen and the other tests.
Hi Jumper99, I'll keep at it
I tested negative to most of the tests for quite some time, as did my children then we all passed two out of three, plus Lupus tests. I am sorry you are having such a difficult time, please do get paper prints out of anything that has been tested or by email so you can keep an eye on things. MaryF
Hi MaryF, my daughter already has the livedo reticularis rash on her legs, like me. She's in her early 20s. She has had headaches since the age of 8. Aspirin is the only thing that gets rid of her headaches. I need to speak with my aunt - I'm sure I heard that my maternal great grandmother lost 4 sons during the late stages of pregnancy/ 1st few weeks of birth. They were all born premature. She had 4 successful pregnancies - 2 daughters and one son.
Your family picture, sounds very very familiar and not unlike mine. MaryF
Things were different back then - I heard she dressed her son as a girl for the first 7 years of his life.
I agree with Mary. First thing my Dad taught me was to keep a paper trail of all your medical records for life. You could start that now. That advice from Dad and be prepared when you visit your MD. Have a list of questions, bring your journal, a file of the paperwork so he can explain what and why he did the tests he did. Write his answers down. Also ask for a written consultation letter. That's what you are paying him for. If I were put off again, I would find another APS specialist and let your current MD know exactly why. Also, if you get the paperwork right away the new caretakers may have the records instantly. I believe this disease is transient. Sometimes it is active (worse) and sometimes it is not as painful. I can now almost feel a flare coming on. It generally lasts weeks to months and then calms or another disease is screaming louder. I do hope you feel better. I hope you get the proper tests and education about APS. Most of all, I hope you manage to smile through it and do your research! YOU matter. Be healthy.
CanaryDiamond10
Hi CanaryDiamond10, Ive been off the website as I had an awful flare up of neck pain. I've C2/C3 arthropathy, on the left side. I had a couple of head injuries in May. The neurologist (he did a phone consultation, never met the guy), said I had post concussion syndrome! I then received a totally unexected call from my GP who said he wanted to 'catch up', but the receptionist who called said the neurologist said I should be called in. Now, our GP practice is in lockdown and even picking up a prescription is like being in a space shuttle airlock. I got the feeling he wanted to make sure I was alright ie, not depressed. I'm a tough old cow who raised kids on her own, worked etc etc. I definitely think I had an inflammatory flare up. It might have been arthritis related but Ive never experienced pain like it, not even when I had my c-sections. It's not in my mind and if it was post concussion syndrome, I wouldn't be starting to feel a bit better. I'll call the GP and get a note of the bloods that were done. I've lost half a stone in weight over 12 days - part of which was due to the nasty painkillers they gave me. I've never been a pill popper and there is no way I'm touching them again. They were poisonous. I'm going to collect my thoughts and see someone privately.
Sorry for the long rant!
Newbie: If you need to rant, this is the place. It's all overwhelming every time a flare decides to happen through no fault of your own. How long have you been diagnosed with APS?
Hi CanaryDiamond10 - I'm afraid I'm still fighting to get a formal diagnosis. Background - miscarriage at week 17 (placental abruption), pre-eclampsia week 34 and prem baby week 36 due to placental insufficiency. I was put on daily aspirin for 3rd pregnancy as the obstetrician said i had 'sticky blood'. This was back in the mid - late 1990s. I didn't question what this meant, at the time, until someone on the thyroid forum (I've auto-immune thyroiditis) said it could be APS - when I talked about this there. I also have livedo reticularis on my legs. Headaches, brain aneurysms, AVMs and fatal brain bleeds run in the family. I have a brain aneurysm. I think APS is behind it all but I'll get it checked privately.
I am convinced I was born with it. I have been covered in livedo reticularis, all over, since I can remember. I had a 5 yr, marriage that failed due to lack of children. I now have 2 adult children who gave me 3 grandchildren. The aneurysm is what would scare me. Read the archives as they are most helpful of how APS affects people differently. I have several other diagnoses, CNS vasculitis, fibromyalgia. Until you get the actual diagnosis I don't think you can do much till you see, how each diagnosis affects the others I think you are at the mercy of your MDs to plan a medical route that would effect all co-morbidities. Then take a deep breath, (a shot if your prefer) and tackle it as it comes. The more research I did the more confident I became. Good luck, Newbie_1965.We're having a heat wave in Chicago and I'm swelling by the second!
Thanks for your reply CanaryDiamond10 - it's quite scary when you think of the other conditions that can be associated with APS. It's cold in West Scotland at around 11 degrees Celcius. Hope you stay well and healthy.
Flying when you suffer from APS.
Global APS Score
Update with new APS Dr
Update on Mayo visit
Help please, What do I ask my GP now?
