APS dx with pregnancy but has not been treated since

[armywyfRN]

Hello everyone! I am new to this forum. I am in desperate need of insight to APS. I was initially diagnosed 7 years ago during pregnancy and was treated accordingly. Postpartum I was not advised to continue with any maintenance. 2 years ago I was treated again during pregnancy, and again no follow up treatment. Now I have had a TIA, joint pain, aphasia, and limb tingling. Is it possible that with no treatment I am now experiencing the complications of my APS? Previously my complications have only been noted with pregnancy. Please help! Thank you.

[MaryF Administrator]

Hi there some people do just have problems in pregnancy others beyond this. It is a condition which can change over time and needs keeping an eye on. Your GP or original team needs to refer you to a specialist with knowledge of Hughes Syndrome/APS, if you have not done so already, please do familiarise yourself with the charity website, you may wish your GP to see this site also. List on the website are consultants with a working up to date knowledge of the disease across the UK. If not in the UK, I or other members may be able to suggest our routes. hughes-syndrome.org/ hughes-syndrome.org/self-he...

MaryF

[armywyfRN in reply to MaryF]

Thank you so much! I am trying to learn as much as I can! This forum is a God send!

[tassie]

Some people only suffer with APLS during pregnancy and don't go on to have other symptoms so possibly why they didn't offer any further treatment. As we get older it seems that we are more likely to develop other symptoms so it would be sensible for them to monitor us more closely.

Sadly many of us don't get any help until something major happens.

If you haven't already I would suggest making lots of noise to get some help with your developing symptoms.

[Hidden]

I am in the same situation. I was diagnosed 17years ago after a miscarriage. I have had so many different opinions from doctors. But my gp has finally referred me to see a heamotologist so I hope to get the answers I need. Maybe try the same thing. It is so frustrating when U know there is something wrong and no one takes U seriously. Hope U get the help U need

[armywyfRN]

Thank you so much! I am overwhelmed with tears of joy that there are people who understand what I've been going through. I recently saw my GP and she sent me to a neurologist and he consulted with a rheumatologist. I am hoping my new blood work comes back soon however I was able to get my original medical records that show my diagnosis. Again I thank you so much for giving me some insight on which direction I should be heading.

[ccurrey79]

Im in a very similar situation, i was diagnosed in 2006 after 4 miscarriages and early onset pre eclampsia, during my next pregnancy i was treated with clexane and aspirin but have not had any follow up treatment.

Since then ihave had various symptoms that i just put down to being a busy working mum.

Since October I have had significant pain in both my knees which my Gp says is tendonitus, i have asked if this could be related to my APS to which he replied he didn't think so. Eventually he has agreed to refer me to a rheumatologist but can anyone give me advice on what will happy next.

[armywyfRN]

Ccurrey79, unfortunately I am like you! I am waiting for a referral to a specialist. I am having a flare up and this sucks because I'm in a lot of pain and I don't want to go to the ER because they think I'm nutso!

Hope we get some answers! Good luck!