I found about Hughes syndrome, not yet diagnosed but know that this is the "why" i have been looking for. any help w/ getting started?

[kaylamarie]

I have no clue of where to even start...What is it? I am trying to find credible sources and some support.

[MaryF Administrator]

Hi there, and welcome, the first thing is to approach the medical professional you feel most comfortable with, on our actual charity web site, you can see all the medical papers, some of them you will see could be supportive to show them, what is backing up your own research. For many it is a simple and cheap blood test to see what is going on, then a referral to a rheumatologist or haematologist, depending on where you live. Hope this helps. Let us know where you are located, as we may be able to give you more local detail. Mary F x

[kaylamarie in reply to MaryF]

I've had a rheumatologist for 7 years since my diagnosis of lupus when I was 16. They have done no blood tests, no medication updates/changes for at least 3 years. I have daily memory loss (had 5 blood clots in my lungs and 1 that went to my brain and caused a stroke). I am only 23 with no living parents. I am doing this all on my own. I feel really let down by the medical community.

[MaryF Administrator in reply to kaylamarie]

Hi there again, unfortunately the medical community is still slow to catch up with this! Often you find other hints of it in your wider family, not always, but certainly the case with mine. Sometimes, when politely given the correct medical papers to read, some medics are actually relieved to find out, what to do with somebody on their books. I am sure we can help to some extent, we have members on here from all over the UK and from other countries, let us know. Mary F x

[MaryF Administrator in reply to MaryF]

Hi there again... Stay on our forum for full support, and in the USA: there is also this: americanaps.org/

and also some names on here: apsaction.org

and very soon you will have a number of supportive replies from those in the USA who will also help you with their knowledge of localized care in the States... you are nearly there now, in improving your lot.. and I hope you find the medical papers on our site useful.. lots of people down load those and print them out for medical staff, including myself I might add. Mary F x

[CanaryDiamond10]

Hi Kaylamarie~ What a beautiful name! There is no need for you to feel alone. The very first thing I would do, if I had no living relatives and I was your very young age, is get a therapist to help me through this in a psycholigically healthful way. You may be worried about something that isn't there, when you should be worried about something a doctor could find and treat. If you truly feel you have this disease, the administrators on this site will prepare you with credible sources of information and you can print it and take it with you to your doctors appointment. It will guide you and your doctor as to the tests necessary for diagnosis. You have a lot to read to educate yourself in order to advocate for yourself.

Inasmuch as support, well you have come to the right place! Many APS patients help each other in so many ways on this site that it amazes me daily. And I am certainly one of those people who has received positivity, education, encouragement and courage from other patients. Patients whose disease is much worse than my own. Most of the time I feel like a real whoose. (if you're not American that is a slang term for a weakling). Some of the patients have been through and continue to go through so very much in a healthcare system that doesn't know how to aid them quickly enough, and is so overwhelmed it is at bursting point. Therefore, practically no one, particularly rural people, get the care they deserve and need in time to help.

But there is light at the end of the tunnel~ because once you DO get to the right people, DO get the right diagnosis, and DO get the right medical management; people live productive, meaningful, full lives in which they can set positive goals and continue their dreams. Examples? Every adminstrator and volunteer on this site has been diagnosed with APS. One patient hears the ring of truth in anothers.

I know that many questions will be answered for you once you begin to educate yourself on APS. Education is a powerful weapon. And it presents a psychological calm if one has time to prepare, because once prepared it is easier to understand and once YOUR PARTICULARS, are understood a plan of action may be developed and executed. Ha! Sound easy on paper but we all know it's not. Not easy at all. But you WILL manage it. I wish you the time, patience, courage and bravery you will need.

Smiles, hugs, prayers and a hearty ho-ho-ho!

CanaryDiamond

[kaylamarie in reply to CanaryDiamond10]

Thank you so much!!!! I am so grateful to have found this site and all the bountiful support!!!

I have a therapist now and since I am playing limbo with my medical disability, and not being able to hold a full time job, I see a therapist at my church that I go to. I am thankful to go to such a huge church (about 200 people for each of the 3 services, and double that for two campus locations.) She sees me for FREE because I have no way of paying. I just lost my doctor because of a bill that I owed them. I am barely swimming or treading water here, but I am not willing to sink!!

Thank you so much for all the support!!!!! Truly, you are such a relief and a god-send to my heart!!! <3 Kayla Marie

[kaylamarie]

absolutely feel free to ask questions. Sorry I didn't state all of it but it's just overwhelming with ALL that has happened.

I live in Pennsylvania in the United States.

here's the basics:

2001 or earlier (I was about 12 years old) my dad died and I had a stroke. We didn't know of the stroke or what caused it until about 3 years later. and when they did, any symptom i was having of the lupus developing: memory loss, and blood clots they pushed to some other reasons that l must be having them. Until my entire body shut down, bombarded with 5 blood clots at the same time in my lungs, 17 tumors in my lymph nodes and they confirmed that I had lupus anticoagulant. I have never looked into the anticoagulant stuff other than i knew i needed to get insurance to have the blood thinners again.

I now have insurance and next month after my surgery to remove all of my teeth, they are going to do coumadin everyday, blood tests (pt/inr) to test my levels every week, and add in the injections of heparin or lovonox.

[Renae]

Kaylamarie, do you have lupus or lupus anticougulant or both? I can sympathize with you I had my heart attack at age 26, I am now 43 and have suffered 2 strokes since then, one of which almost took my life. In 2010 I was on life support for a stroke. Since your diagnosis with lupus anticougulant have you been on blood thinners at all?

I live in Las vegas nv. I had all my top teeth pulled at the age of 30 due to insufficient blow flow, I have a top denture it isn't so bad.

have you tried to get on ssi disability? If not you should apply asap.

[kaylamarie in reply to Renae]

Hi Renae!

Yes, I have systematic lupus enrythmatosis and lupus anticoagulant (hughes). I was on blood thinners years ago and my doc stopped them because i lost insurance and couldn't afford the weekly pt/inr testing and said that it was just as dangerous to take the blood thinners and not get tests as it was to not take the coumadin at all.

I am on like 4 medicines now plus the three antibotics that I was prescribed last night at the Emergency room for my teeth.

I am so much pain now from my teeth that I might have to stop working (just babysitting) and wait til surgery.

I have filled for medical assistance, now have that, and applied for disabilty and now can't mentally function to help with that at all but hopefully my lawyers will help that all work out soon.

[MaryF Administrator in reply to kaylamarie]

Yes, sorry to hear this, you should not be off the thinners that is medical negligence in some form, insurance over basic care, shocking. Sorry to hear this, keep us posted and we will help as much as possible. Mary F x

[Renae]

Yes your lawyer can help with the ssi. Hopefully you get approved fast. I was denied 2 times and finally had to have a hearing, but I won at the hearing...

Good luck hon and keep us posted.

[MaryF Administrator in reply to Renae]

Good to hear that Renae. Mary F x

[kaylamarie]

Seriously thank you every one for all of your support!!! I can't describe how big of a blessing you have been to me just helping to navigate through this with you all! Happy Holidays!! Kayla Marie