Good morning, I'm new here never posted. I will do my best to introduce myself with out writing a novel. My name is Laura I'm 52 live in NW Pa. USA. I'm new to APS.a few months in to this . I was DX with MS when I was 38. Everything was rolling along until January of 2019 I couldn't walk right away I thought this was it MS wins . Seen PC he said MS but to be safe he did a sonogram on my legs found 3 clots well needless to say tons of blood work and in August went to see blood doctor there it was. APS well being a human being I got depressed and why me MS , APS, what next. They are still trying to get my warfarin right oh boy, the ups and downs are very real. This is a teaching experience I tell my doctor about it and he looks it up. He dont know much about it I'm going to see a new doctor in Pittsburgh in January. So with Hope's he knows more and can get me on the right path to be Simi human. Thank for reading and it's been nice meeting you. Xxoo
Nice to meet you. : Good morning, I'm... - Hughes Syndrome A...
Nice to meet you.
Hi welcome. I private messaged you. You should see a number up by chat above press that and you will see my message. Let me know if i can help. Cindy
Hi welcome, it can seem very daunting and scary at first, but with the right APS team, our condition can be managed.
Many of us have had a long road to diagnoses. Many also have had a diagnoses of ms to only find out it was APS all along.
Please ask as many questions as you like, we share our own experiences on here so can give you some hope for a 'semi normal' life.
Please take a look at our charity web pages, as this can be most useful :
*** website address edited by Kelly***
On this site it will also give you a list of APS specialist, as this is the key to getting the right treatment. Hopefully the specialist you are seeing in January knows all about Hughes/APS?
Hello there,
Great to have you here.
Holly’s link may not have uploaded quite right-as I did not see it highlighted in blue- which normally it does. I’m not sure. I’ll try one more time.
Let’s see if that works.
Come back with any questions, will be happy to help you out.
Hello and welcome, your history is quite familiar to a lot of us on here. I do hope your up and coming appointment goes well for your, it is so important to have the right consultant, in other words one who fully understands this disease. I also enclose this paper for you, to go with the website details you have been given: the-rheumatologist.org/arti...
We all learn off each other on here, and with the help of the right medical teams. MaryF
Hi and welcome. Yes it is very daunting at 1st... Feel free ask questions this site so helpful... Message me anytime if u like any advice or help.. We r friendly lot. Xx
Hi Eriewa1,
Just getting back to you now, with a little more time on my hands after my work day today.
Firstly-
Isn’t a shock to find out so abruptly like that? I found out very quickly as well, and then suddenly a clot and in the hospital for 10 days - heparin and bridging to warfarin...
It is a lot to figure out very quickly, especially when / if you are not feeling well.
If you have insurance that allows crossing state lines, and Princeton NJ is not too terribly far, Dr Thomas Blom is a very good Hematologist with APS. I live in Texas, but am in Princeton off and on, so I also have a hematologist there. I can personally recommend Dr Blom.
Im not that far from you in central West Virginia. Welcome to our site. Learning to live with warfarin can be tricky. My diagnosing hematologist gave me 2valuable suggestions: First, keep a notebook of foods eaten as well as activities. With time you will notice INR correlations that can be very personal. And after you learn your own body's reaction to warfarin, you can then ditch the notebook. For example. my INR goes up a bit when I'm in the sun a lot. But I find that I can consume a lot of Vitamin K rich greens and as long as I stay consistent that works fine with me. :
Second--Drink by the clock, not necessarily by thirst. When body fluid levels drop, blood gets thicker.
Gina in WV
Hi Laura. I live in Pittsburgh and have worked with nearly every hematologist available in the area. I private messaged you with some names of docs familiar with APS in the area. I know you already have an appt but some are better than others with regard to familiarity.
Regards. I do hope things improve on warfarin.
Thank you very much, Jmiller. Excellent!!!
Hang in there. Getting stabilized is the hardest part. I still get blood checked weekly by a vein blood draw sheet the years. You will be fine! Keep moving forward!
Buck Westbrook
reggie22264@gmail.com
Hi and welcome- i learned as much as i could and brought documentation of research and articles with me my first appointments at doc's . Din't take NO for an answer and stuck to my guns - i to was shocked when they told me both of my lungs had clots {this Sept 1 2009} R lung full of clot clusters and left a solid clot across the entire bottom of lung inch thick .this was a Monday --Tues they checked the rest of my body and found clots in left groin and behind left knee Popliteal vein large clot - in left neck and under left arm pit .was just loaded-and that all started with a funny pain in back !! i had Doc's i had to walk away from and others that wanted to learn . lots of help and friendly people on this site -tons of experience and Knowledge here. - I am in N.H. No Doc's around here knew anything about APS here so it was a battle but with help research and not taking no for an answer was huge. don't get discouraged and learn what you can before appointments is a must . here for you C & J
Thank you Gina - I wouldn't be where I am now had it not been for , like people as yourself . You go way back with this site and have always been there for us. many of our friends that are no longer on the site are missed and we also have some new people stepping up to fill the void . I will PM you in awhile with the next thing to set back the battle nothing in stone as of yet - I will bring the rest forward when things get ironed out more and with me it can get very complicated as you know thru the years . Thanks for the kind and thoughtful words my long time friend . Hugs from Casey and I to you and all your 's down below . 
Welcome! I am 52 as well and like you, this is new to me over the last 6 months. This forum has been life saver for me and a tremendous resource for support. As you already know with your MS diagnosis that it takes time for everything to get on track.
Ask questions as often as you need to and be your own advocate! I hope it all gets straight for you soon.
Dx with ms in ‘96 and APS in 2007. It’s difficult but we have to make the most of what we have
I too was diagnosed with MS in late 30’s, but it was never MS always APS! I hope u find a good Hemotologist! I live in LONG ISLAND NEW YORK! You’ll find this site very comforting! It’s been a lifesaver for me too! We try to help each other and vent our frustrations with the Medicsl World and how unfamiliar they are with us! I’ve had Doctors get angry at me cuz they didn’t know what to do! They actually dismiss me! It’s ok I’m use to this! I’m here for u whenever you need to talk or discuss anything! Godspeed...
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