Help and advice

[Daisyyellow]

Hi there - new to this group and just wanting some advice/insight. Since early this year I’ve been suffering from strange symptoms. It started with swellings and pain and then has slowly migrated into awful fatigue, blurred vision, memory problems, strange head twitching and very strange disconcerting skin rashes that look like deep purple bruising. I have tested strongly positive for two out of the three Antiphospholipid antibiotics. At the moment I’m not treated. I’m awaiting appointments. Because I’ve not had an actual clot yet I’m concerned I won’t get any treatment. I just wondered if anyone had any experience of how to push for treatment? Would anti coagulants help with the symptoms - does having the sticky blood cause these neurological symptoms?

Many thanks

[Lure2]

Hi Daisyyellow and welcome to our group!

I wonder if you have tested TWICE for two of the antibodies they test for APS? Should be done twice with 12 weeks at least between the bloodtests.

Is it a Specialist of autoimmun illnesses who has tested you as you have also been on the Lupus site here I noticed?

Before the tests are ready and you are diagnosed you could possibly start with a baby-Aspirin (75-100 mg is enough) daily. Take if with food. That may make you feel better as to the neurological symptoms. If you like you can ask your GP. Before anticoagulation we usually start with a baby-Aspirin.

Read"Sticky Blood Explained" by Kay Thackray. A very good book about APS.

Good Luck

[MaryF Administrator]

Hi, yes this condition can cause neurological symptoms, it is very important that you and your GP have the help of a consultant/specialist who fully understands this condition, there are quite a few on the charity website: ghicworld.org/ghic-consulta... If your GP is in the process of doing tests, it is very important also to look at the levels going on with your Thyroid, B12, Folate, Ferritin and vitamin D, as this can all make things worse, I enclose this as an initial read for you.

the-rheumatologist.org/arti...

MaryF

[HollyHeski Administrator]

Hi, welcome, it sounds like your on the right path, continue to gather all your knowledge and await all the results. Once diagnosed it will be really important to get an APS specialist.

[Lure2]

I just want to add that it is not certain that you feel better from a baby-Aspirin. Usually the Specialist will do a trial of LMW-heparin for some weeks (Prof Hughes often did that) to see if the symptoms vill improve. I read you did have pins and needles and that is also a symptom of too thick blood that has to be thinned. If the symptoms will improve with LWM-Heparin he may propably switch you over to Warfarin which is the best drug for APS.

Please continue to look for a Specialist now as you should not have those neurolgical symptoms you have had so far. Let us hear how it goes for you.

[hihannula]

Yes APS can cause bizarre neurological symptoms. I walk around in another realm half the time!