New to APS Scared but relieved

Hello. I was diagnosed 2 days ago with Hughes Syndrome and I cried. Not in fear but in that someone had finally found out what was wrong. See I live in Colorado in the USA and all my life since childhood I've had pain in my limbs heavy menses,migraines that put me in bed for 3 days, a child born at 24 wks due to eclampsia another at 27 wks at 21 yrs that lived. At 32 I got a clot in my illiac artery and since last November I have had a splenic infarct, PE and small renal clot. My docs kept saying all that was wrong was my anticardiolipids were high. Well guess what? THAT WAS THE ANSWER!! It took me demanding to go to University Hospital where Dr Jill Schofield took one look at my history,my skin and diagnosed me in 5 min. I am beginning treatment and so excited to reclaim my life at 38. God Bless you Dr Hughes for giving people like me and even my mother who was wrongly diagnosed with MS our lives back!

13 Replies

oldestnewest
  • Hi and welcome to our forum.

    Thank you for posting your experiences. Many people on here have had to fight for a diagnosis.

    I'm sure that others will reply to you soon.

    Please have a look at our charity's website:

    hughes-syndrome.org

    There is a lot of information on there, including books to purchase.

    Let us know how you get on.

    Dave

  • Hi and welcome to this friendly site for APS!

    First of all I agree what Dave has already said.

    I wonder what sort of treatment you have started. I also want to tell you that it is very important to have an APS-Specialist who knows what to look for regarding all the symptoms of this rare illness.

    Give my regard also to your mother! I have APS and I am 71. My youngest daughter is 38. Has your mother got the right diagnose now?

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin and thank you. As of yet my mother still needs to have the blood tests ran. But her history is almost identical to mine except she as far as we know has not had blood clots. I am also having my children tested because there is speculation that APS is genetic. My 17 year old has some symptoms such as migraines and memory loss as well as being fatigued. My 6 year old also has had autoimmune issues starting with H1N1 at 9 months that through research for children can activate APS.

  • Hi there, welcome to our forum, I am so pleased you have landed here, and that finally you and your mother have the right diagnosis. Please do have a good look around the charity website, lots of up to date information to look at and a list of useful books for possible reading. We have lots of members in the USA and we all learn from each other. A lot of people have also have a long road to diagnosis!

    hughes-syndrome.org/

    All the best to you.

    MaryF

  • Hi Med

    Welcome to this site

    I am one of the people they above are talking about , I live in N.H. USA.

    Have been on this site for almost 5 years , we live and learn as a group.

    So don't be afraid to ask for anything you need . Casey and J -- Penacook N.H.

  • I want to thank everyone for such warm welcomes. Right now as I replied to another I am having my mother as well as my children tested because of recognized symptoms and as a mother I feel obligated to make sure my children are getting everything they need. As for treatment the plan right now is apaxiban because warfarin doesn't work for me and plaxiv instead of aspirin because I am allergic to aspirin. Again thank you all so much.

  • Another book to add to your list (considering family concerns:) The Autoimmune Connection by ita Baron-Faust and Jill Buyon. If my aging memory is correct, this is the book wherein I learned that specific autoimmune diseases are not inherited, but the tendency to autoimmunity is. And within that "tendency" is embedded another tendency to inherit an autoimmune disorder from the same "family" of autoimmune diseases. Our "family" includes Lupus, Sjorgens, and fibromyalgia.

    But having a family history of autoimmunity does not seal one's fate: there must be a genetic tendency AND an environmental event. Give the # of us who have had mononucleosis (aka in the UK glandular fever) it seems likely that a bout of mono may well be one of those environmental triggers for APS. Also, gluten sensitivity/Celiac also seem to be strong co-disease and may therefore turn out to be an environmental cause, or a result of some other cause. But whether gluten is the chicken or the egg, many of us have become much healthier by following a gluten-free diet. (Note: if you want an official med diagnosis of gluten sensitivity or celiac, do not go on the diet before talking this over with your doc. If the GTT test (which is the blood test for gluten sensitivity) is run on people who are already on a gluten free diet, the test may yield a false negative.)

    Gina in West Virginai

  • Hi again,

    I agree with all the others above! MS is often mixed up with APS. These autoimmun illnesses go hand in hand and also Thyroidea probably.

    Hope you now has got a Doctor who really knows APS. Otherwise try to find Another for your family and yourself.

    Read also "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes about the different symptoms of APS. This book was writen some years ago so the new drugs are not there but the symptoms are the same. It is a good book about living with APS.

    Best wishes to you all. Please stay on here and let us hear how you get along.

    Kerstin

  • Welcome. So Glad you were able to find answers. My answers are yes, no and maybe. I decided to live with those and live my life as best I can. Answers offer great relief. So Happy for you that you have found this. Keep on with positivity, get rid of all things negative and laugh a lot. Know that you will be very supported on this site. Cheers!

  • It took me 2-3 years to be diagnosed by Graham Hughes many years ago!! It is such a relief when you get an actual diagnosis!!

  • I too am in Colorado and Dr. Schofield diagnosed me....I am very lucky to have encountered her. I had a venal sinus thrombosis with low blood pressure and no cause and my neurologist put me on warfarin and told me to stop taking it after 6 months...luckily Jill tested me and I am now on Eliquis and working to resolve ongoing headache issues I've had since my stroke a year ago....We are snowbirds heading off to Florida soon, nice to know there is someone else close by with the same issues.

  • I agree she has been a god send. Medicaid currently has my Eliquis held up for authorization but once they clear it I will be on that and instead of aspirin due to allergy I will be on plaxiv for platelets. She has also put me on a high vitamin D because my test shows me at 10 and with APS we should not be below 50. I'm hoping my clotting and other painful symptoms come under control. I've been very I'll for many years and with small children it's hard. Its very nice to meet you and know someone near that knows the same Dr. =)

  • Wow I'm also in Co. & u just told my story! That's crazy

You may also like...