Hotelfanatic

[Hotelfanatic]

Hi everyone,I'm new to this group,was diagnosed with Aps 2020 after a miscarriage in 2019 ,no children,only got pregnant once and lost the baby at seventeen and a half weeks pregnant.Had bad chest pain a couple of weeks later and turns out I had clots in both lungs and few months later clots in my leg so now on lifelong warfarin,lots of symptoms, balance issues, pains in my bones,redness in my face, migraines, numbness in my face,pains in my chest , stomach problems.Most days I'm okay but I struggle from time to time, nice to read your stories.

[Star13]

Hello and welcome. So sorry to hear about your loss and about your various symptoms which unfortunately are familiar to a lot of us.

Hopefully once your medication is under control and you have a good medical team to guide you, things will settle down.

[Hotelfanatic in reply to Star13]

Thank you,it's nice to hear from others with the condition.Diet isn't great 😅and I do like a drink at the weekends which I'm sure doesn't help but you have to live to.Like I said I'm not too bad because there's a lot worse stories than mine.

[GinaD]

We are all so lucky to live AFTER Dr. Hughes documented our disease. Once upon a time, our symptoms were dismissed as " psychosomatic. "Now, even though finding each individual's effective treatment can be difficult, we at least have a way forward.

[snorkle272]

I was fortunate to be diagnosed with APS when I was. I’m pretty certain I would have been dead years ago without that diagnosis. I had already had three major strokes without knowing that I was having strokes. (In part because the strokes didn’t present themselves in a normal fashion.. Which is often typical for us women.) The first one was in my 30’s. The next two were within months of each other in my late forties. I was clumsy when I was younger, so just figured my new balance issues were to be expected. It wasn’t until a lot of testing was done that I learned what the heck was going on with my body. I was being tested because of visual problems, that turned out to be dozens of mini strokes happening.

I’m very sorry for what you are experiencing. It’s scary and you’re probably wondering “why me?” I found that educating myself about my illness helped lessen my concerns.

You came to the right place. And it’s okay to be upset about it. 👍

[LindaMorrell in reply to snorkle272]

Hi Snorkle

Yes I couldn’t agree more, very good hotelfanatic found this site. I was so glad I did. I had a TIA mini stroke unbeknown to me also. I had eye issues and found that SLE systemic lupus was affecting lots of my major organs, unbeknown to me. Then went onto develop APS. Followed by MS. I often wonder which disease actually was there first in my system.

Dr Hughes did all of us proud. He gave us the confidence to try and fight these disease issues by learning, educating ourselves as well as educating doctors and specialists as to what we are going through. New research and new drugs are making our lives much more tolerable and for many helping friends and family understand our plight.

Thank you for all the people who explain, what they went through, how they found help and how they started to get answers and help.

Good luck from Linda Queensland

[KellyInTexas Administrator]

welcome to the club no one wants to be in- but glad we’ve found. Hope to be of support to you.

[snorkle272]

You mentioned that you are experiencing balance issues as well. I have found that since I developed my own balance problems, I have become a good sailor! I know that sounds strange, but with my equilibrium being out of whack I can travel very rough seas without feeling sea sick at all. Very bizarre I know, but it became a great plus during a particularly rough sea voyage from California to Hawaiian Islands. 👍