Undiagnoised with some abnormal labs...

[unluckylissy]

Hello All,

I have a problem apparently no doctor so far can figure out. But here are my abnormal results elevated pt and attp, elevated crp. No factor deficiency, no von willebrand.  My relevant symptoms are extreme fatigue (8 years) daily,  sporadic joint pain that lasts months then vanishes for months, migraines with auras (few per month), petachie,  livedo reticularis,  random tiny blood blisters (single) two separate occasions sometimes easy bruising when 1st got ill i have over 100 bruises on my legs due to no injury, mystery welts (no contact jump popped up like 4 vertical scratch marks), balance issues, my train of thought is way off sometimes forget words very foggy minded, along with postural orthostatic tachycardia.

My mother has had to receive blood transfusions for drops in her red and white cells, her sister has RA and probably more with organ failure, malar rash, her other sister had MS which she passed, my moms mom died at a young age of mysterious health cause the were too young to know and no autopsy was performed. 

I believe I have a autoimmune disease but I do not have +ANA. When they test for APS they use drvvt to confirm LA And it comes back negative. Any thoughts and opinions appreciated.

[MaryF Administrator]

Hi and welcome, firstly where are you located?  This will help us to assist you more easily.  Results can come and go with testing, make sure all these 3 tests are done, and preferably at a hospital testing centre where the time sensitive samples taken, do not hang around:  hughes-syndrome.org/about-h...   It is also not unheard to have Thromboytopenia alongside Hughes Syndrome/APS.  Some of us do also have Lupus, I do, however often the trio of disease as often written about by Professor Hughes himself is Hughes Syndrome/APS, Sjogrens Disease and a Thyroid problem.  MS and Hughes Syndrome have overlapping symptoms and in some cases the MS turns out to have been Hughes Syndrome/APS!  Often families are full of autoimmune diseases among the different relatives, past and present.     MaryF

MaryF

[unluckylissy in reply to MaryF]

I'm from Northwest Florida

[MaryF Administrator in reply to unluckylissy]

Ok, well we have quite a few from the USA on here, so you will get some names, however there is also this:  apsaction.com/    MaryF

[unluckylissy in reply to unluckylissy]

And I have had those 3 tests only LA comes back positive but the drvvt to confirm it comes back negative...have had 3 LA tests 

[MaryF Administrator in reply to unluckylissy]

Ok, well a positive test result is  positive test result, also get any doctor you see to look at Iron, B12, D and your Thyroid also, best of luck.     MaryF

[unluckylissy in reply to MaryF]

Ok thank you I am definitely getting a second opinion from a new doctor very soon. 

[Elfie1 in reply to unluckylissy]

Hi , I started with bruising and joint pain .I had thrombocytopenia for a lot of years with nothing showing in my bloods until a few years ago .hope you get sorted .Ps.a good Rheumatologist or even Haematologist is essential to getting a proper diagnosis .all the best Elfie

[Hidden in reply to unluckylissy]

apsfa.org/apsfadrlisteast.h...

apsfa.org/apsfadrlisteast.h...

recommend (scroll down) starting with a Rheumatologist (if we have APS high probability of suffering from more than 1 autoimmune disorder...AD's are systemic)   and perhaps a Hematologist

Best wishes

[Ylmom]

So sorry you are going through this. Nothing more frustrating then knowing something is wrong and no having a name. I was there too. Hang in there and keep searching. You have to be you own advocate. Unfortunately a lot of the time, if it is not screaming positive with any illness, you get pushed to the side. Keep going! 

[unluckylissy in reply to Ylmom]

Thanks encouragement really matters. Some days I feel like a alien feeling so sick and they never have a answer. I have take breaks from going to the doctor because it just becomes too frustrating and there's been a few times I lost hope for answers. I cry a few times per month 8 years is a long time to fight everyday to function. I'm glad I found this site 

[Lure2]

Hi there and welcome to our friendly site for APS(Hughes Syndrome). First of all please listen to what Mary has told you. She knows so well what we have to do and look for.

I have also had positive Lupus Anticoagualant for several years. I am now on anticogulation with Warfarin and now I can not take those tests anymore. The two other antibodies I also have i can take and the tests  are positive even if i take  Warfarin

I would like to say to you: Find a Specialist of APS! So very few doctors know this illness and a Specialist knows what to look for re symptoms. Also if you have Livedo Reticularis it is said to be a sign of APS. Take a photo of it. 

Read and learn as much as you can about APS. Read "Sticky Blood Explainced" by Kay Thackray. She has APS herself and writes about all the different  symptoms. It is good even for relatives to understand how it is to live with this illness. It is written some years ago and the latest oraldrugs are not there but the symptoms are the same.

We have too thick blood and need anticoagulation. I am primary APS (no other autoimmun illnesses known so far) and Warfarin has been a lifesaver for me. I selftest and decide about my Warfarin-intake myself. I live in Stockholm and here is is easier to selftest as everyone on Warfarin  around the Stockholm-area have free machines and strips and lancets. It is probably cheaper than visit a lab for a veintest every week. 

Pleast stay with us here. You will learn a lot from our knowledgable and kind members. We are in the same boat and learn from each other!

Best wishes from Kerstin in Stockholm

[Hidden]

many names listed for NW Florida and Southern Georgia