[Terri_H]

not sure what is wrong with me i posted under the not yet diagnosed but after reading some of yours im not sure i have the opisite they have put me on wafrin because my blood is clotting and it caused a stroke. Mostly i am surching for answers the doctors cant seem to give me im tired of living in pain and very scared of not seeing my kids turn 18. I'm feeling alone and couse no one understand all the tests i have no suport. I had my stroke in Aug 2008 and the tests have not stopped just when one doctor said i had lupus another said i dont I just want to know whats wrong with me

 

[lazylegs]

Hi Terri,

Welcome to the site. I am sorry we have to meet under these circumstances. Hopefully we can help answer some of the questions you have.

The following site will explain the lupus anticoagulant test and the anticardiolipin antibodies http://www.labtestsonline.org/understanding/analytes/lupus_anticoagulant/test.html

Information about antiphospholipid syndrome can be found on the following site
http://www.hughes-syndrome.org/symptoms.htm
If you read back posts in the "Related Conditions" or do a search for antiphospolipid/
APS you will see questions by others on the site.

I hope it doesn't take too long for the doctors to come to a diagnosis.

Take care,
Lazylegs

 

[keebler]

Hi Terri,
Welcome to the Lupus Site. It is nice to meet you.

I am sorry to read all the troubles you are going threw.:hug:

Have you been seeing a rheumatologists ? Not all are familiar to lupus. Second opinions are necessary to find the right doctor. (some have gone threw several to get the right doctor for them)

I hope you find the answers you are looking for.

Take care,
Lyn

 

[Barb G]

Hi Terri,

I'm sorry you're having such a tough time. I don't have any support either so I know how alone and scary it feels when you're constantly sick and don't have any support. My family members, including my mother, sister, husband, in-laws, and others, actually think all of my problems will go away if I just don't acknowledge they exist! They want me to stop going to the doctor, stop taking all meds, etc. Of course they don't think they should stop obtaining medical care or stop taking meds, only that I should. Crazy!!!! You must do what you need to do to take care of yourself. This board will provide the validation and support you need when you can't find it anywhere else.

Barb

 

[Terri_H]

Thank you all for your suport and kindness those links were awesome mostly when i read the one on hughes syndrome. I have said non stop since the stroke that about 1 week after I started the warfrin my face stoped losing feeling on the one side but the biggest diffrence i found was the stiff neck and headachs before the stroke i easly went through 2 bottles of advil and i kept saying the headachs wont ever go away they just go up and down from like a 2 to a 10 now in the last 8 months i can count the headachs on my hands i told the doctor i feel better than i have in years they didnt seem to understand why that was and there it is in black and white i am on meds for an underactive thyroid too which it talks about memory has always been bad i just brushed that off as being dumb not sure the next step but it is so scary living in the unknown and living in pain and everyone saying "your too young wait tell your my age"

 

[onetay]

Terri,
Hi and welcome to the site. From reading your intro it sounds like you did the same thing I did and searched the net for answers and all that did is scare me to death. This site has better information and a wonderful support system. We share so much here it seems like we are all family. I know how you feel about being affraid that you will not live to see your children turn 18. I have done it and I am sure that you will also. I also know the pain can be unbearable but there are pain meds out there that can help you manage it. You have to take control of your treatment like many of us have had to do lately. Tell your doctor that you have to have something for the pain. We are happy to help you in anyway that we can and there is a chat room hope to see you in there sometime.