Log in
Sticky Blood-Hughes Syndrome Support
8,648 members8,744 posts

In pain and Confused!

I first must start by apologizing to Kerstin! Wen I sent that message I thought it goes all over! I'm a self taught DUMMY ON COMPUTERS! Lol... I've been having pain in my rt calf for some time now and went to my Hemotologists partner cuz he was not in! I told him of my leg and he never checked it to even c if I had a pulse there! He just ordered an INR! My INR last time was 1.4 & his results was 1.7! No good! That's Wat a normal range is! Why they can't stableize me I don't know! I'm not a doctor, but I'm assuming it's cuz I also have another sludgy blood disorder called Polycythemia Vera/PV! Thanks to this Site /Blog I have an appointment with a Dr. Caroline Cromwell in New York City, only an hours train ride for me! Luckily my dear sister Lynn offered to take day off from work to accompany me! I'm not afraid to go alone, I work there and go often on my own, it's just CHRISTMASTIME & the crowds will kill me cuz I have a PROSTHETIC LEFT LEG! I must make my appointment his Wednesday by hook or by crook! I CANT WAIT TIL JANUARY before I c this specialist! January my deductable goes into place for $2000.00. I can't afford it! I have an appointment at 3pm today with my vascular doc who is only one I can trust! I shall let you know! After reading Kay Thackray's book I know I had CATOSTROFIC APS a very rare occurrence, but I must own it and fight the docs in USA! Wat WUD help is this APS HANDBOOK THAT BOIK SAID IT CAN BE GOTTEN FROM THE HUGHS SYNDROME FOUNDATION! It's called The Hughes Syndrome Booklet, By Dr. Graham Hughes! It's free wen you join Hughes Syndrome Foundation! I don't care what it costs how can I get this life saving booklet to show my doctors here whom are ignorant to APS? PLEASE HELP ME IM HANING IN BY A THREAD AT THIS POINT! I'm doing best I can and its not enough! I'm at my breaking point and just don't want to be on this earth feeling hopeless and inconsolable! Thanks in advance for any advice you may give me!!! GODSPEED!!!

6 Replies

Bless you Debbie, keep at it and God Speed.

Best wishes.

Dave x


Hi Debbie,

You do not have to apologize! For what? But I thought it was better you did your own question. You know English is not my first language, and I do not know so well about the American Healthcare system.

I can tell you that most of us also have been in the position trying to find a Doctor who we can trust and that understands that we are telling the truth and are not "crazy". I am sure you will very soon meet a doctor who will understand. How about taking info from the Charity website? Do remember that doctors do not like to hear patients say that they do not understand even if it is true. Most of them anyway. If you meet a doctor who should understand APS (a Specialist) you may perhaps not have to show him written info. I think you will notice on the doctor. Good that your sister is with you. Write everything down.

Good Luck and please let us hear how it goes for you. I will Think of you!



Message me your address and I will send you my copy -/ next day air so you can have it ASAP. The book was published in 2001 so, though I have not recently compared the 2, "Sticky Blood Explained," though not written by THE expert on APLS may be more helpful as it was published more recently.

Gina in West Virginia

1 like

Can I put my email here or I'm under Facebook under Deborah Webster or Debbweb


Hi Gina I think I did it right? We can become fb friends if u do fb and you can send fb friend request


I'm not good at Facebook. I am confronted with lots of people with your name, and Facebook does not recognize "Debbweb." But if you would like me to send the book to you I need a physical address for the post office.


You may also like...