Hi I'm Debbie from Long Island, New York, USA! I'm a very happy-go-lucky person ! I don't take "NO," for an answer! Although I'm now 62, it's taken me most of my life and the loss of a leg to finally get diagnosed with APS! I'm now being treated with Plavix & Warfarin! Unfortunately I also have Polycythemia Vera, which is also a very rare disease! I have too much blood which is also thick that they call my blood sludge! So I have Sludgy & Sticky Blood! It's all the other parts of the blood from APS! I recently had a life saving tummy surgery in July and normally I snap back very fast! It's just me and who I am! For some reason I didn't this time and saw a few specialists! I'm under a care of a Hemotologist for over 10 years with PV treatments! He finall diagnosed me! It's been 3-4 weeks now since being DX'd! I'm not stable in my INR levels yet! I just want to snap back! I can't seem to get strong again! By the way that was stomach surgery number 6! I'm hoping soon for some light at the end of the tunnel! I'm getting kind of down & out because I'm an energetic 62 yr old and miss being my old bubbly self! This site is amazingly helpful and informative as to living with APS! Thank Y'All for your selfless responses! If I can help anyone it's my goal to keep anyone informed who needs it! GODSPEED P.S. This photo was taken about a month before my amputation of my leg! I look nothing like that now! Lost 30 pounds and aged tremendously! It's a photo of a better time and who I want to go bak to being!!!
Newly Diagnosed: Hi I'm Debbie from... - Hughes Syndrome A...
Newly Diagnosed
Hi Debbie and welcome to our friendly forum.
The hardest thing, for many on here, has been getting diagnosed in the first place.
You are among friends here and I'm sure that other members will reply to you soon.
Best wishes.
Dave
I second that, a short reply from me as we have already had quite a bit of communication. Keep well. MaryF
Hi Dave thanks! U Kerstin and Mary have responded! Thx! I agree it's taken me a lifetime of different diagnosises to finally get DX'd! Sad but true! It tuk me loosing my leg b4 they cud DX'd me!!!
Hello Debbie should you need 2nd opinions you (and I) are fortunate to live near the prominent APS treatment and research center in the US
hss.edu/conditions_top-ten-...
Where do u live my dear! I live in Long Island New York!
Is the place hospital for special surgery?
yes..I live in the Hudson Valley near Woodstock but travel every 90 days to Basking Ridge NJ to have my blood tested by my Rheumatologist,Dr. Andrea Gaito,....she diagnosed me ( and prevented my suffering a stroke) 6 years ago....she is wonderful and is in the forefront of APS and other Autoimmune DIsorders ..and the relationship between Lyme Disease and resulting Autoimmune Disorders(If genetically predisposition) I met w/ her because I had suffered Lyme DIsease and continued to feel
terrible....all the other MD's in Ulster COunty I went to couldn't figure it out......
Dr. Gaito ,using the most sensitive and at the time most accurate Lyme test ....figured out I was as she saiid "free from all tick borne illnesses " but tested + for "sticky blood"....I had never heard about AUtoimmune DIsoders nor APS....but my paternal grandmother probably suffered a blood clot in the brain that killed her (I did not know her) but all stories point to this
Dr. G prescribed 320mg Aspirindaily and 200mg 2x/day Plaquenil
and I have been feeling well since and my "numbers remain ok".
I also have Undifferenciated Mixed Connective Tissue DIsorder.
Dr. G is my source for recommending HSS in NYC .
Hi Debbie firstly you look great..put women 10 yrs younger to shame. You been through an awful lot with surgery and getting a diagnosis you should be proud of yourself. We all have good days and bad days or good weeks and bad weeks. Don't beat yourself up fatigue is something most of us live with We're all here for you. So God speed in your recovery x
Awe ur sweet! I really don't have anyone but this site! My hubby is 83 & is on Aricept now for Alzheimer's! He just curses me everyday! I have his son whom I've taken care of for 35 years! He's man tally retarded with a rare syndrome calls William Syndrome! He helps me by taking out the garbage and being my legs! I have my dear sister who has a family, but they put their head in the sand wen it comes to me! It's only their immediate family! I once asked my strapping nephews to help me move a couch! I paid someone b4 they ever even got bak to me and one never answered! Oh and I was a great Aunt to them ! Not one tha didn't do anything! I loved and did plenty! I got to a point now where I must sell my house! My hubby don't want to, but I put him in a position now where we have no choice! Where in NY is an APS CENTRE??? Is it the hospital for special surgery in Manhattan! I need to find someone who can help me! I really have no one! I've been a HOMECARE nurse for 35 years now and worked without my leg still, but had tummy surgery in July and never snapped back! This APS seemed to exacerbate my symptoms and APS has taken over for now! I keep trying to get bak to me but it's not letting me now! It's sad cuz I'm a SOCIAL BUTTERFLY WHO HELPS THE WORLD or an animal in the street! I don't even kill flies, I open the door and they go outside where they belong!!! Lol... Can't help who I am I just get no help from anyone accept my neighbor & frien Donna & a Dear friend Marlene! She sends food, although after loosing 30 pounds and still loosing, don't no y has nothing to do with APS! I do have other blood disease too cald Polycythemia Vera! It's a thick blood disease too it just effects the other parts of my blood from APS! Like plasma, hemoglobin, hematocrit, RBC, my WBC and lymphocytes! So I got this double whammy, but it won't take me over I'm a fighter like a bull!!! So it WUD take much more to put me down!! GODSPEED to Y'all!!! Where do you live? I live in Long Island New York!
The Hospital for special surgery in Manhattan is a center for APS. They have a website and you can lookup Drs and their specialties . Also you can just google NYC Antiphospholipid. Some of them have written papers. If someone has written about a case like your own, perhaps that would be a good place. If you are on Medicaid they have aMedicaid clinic.
Good luck.
I am a single woman with no family. Still manage 2 jobs gotta pay the bills. I manage really well on my own. We have a condition that can be monitored. But were not dead yet. So don't feel you have to do everything on your own. There must be some help out there for you? Hospital nurses? Doctors? Good luck.
Thank you Molly! Yes I'm strong and tough and don't take no for an answer! I buck the system that didn't diagnose me in the first place! I just will get in touch with Hospital for Soecial Surgery to help me deal with this disease! I'm overwhelmed cuz I also have another thick blood disease! They've cald my blood sludge!unfortunately it affects the opposite parts of my blood from APS. It's called Polycythemia Vera/PV! Thank you Molly u gave me a burst of strength! Some days I just give up! I'm not as strong as I use to be and I try to b and wen I can't I must retreat to bed! Wen I feel good I take complete advantage of it and do way too much! It's difficult for me to balance things out cuz I'm very active and can't sit still for too long! I am a home care nurse and even after loosing my leg kept certain patients and went bak to work! I snap bak fast! But in July I had life saving stomach surgery ( another misdiagnosis) and havnt been the same since! I was DX'd in September/October! Thanks again Molly!!! Godspeed
Newly diagnosed with APS
Recently diagnosed
Newly diagnosed & seeking guidance
Do we have to look sick to be sick??!!??
