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I am 35 years old and In Aug. 2008 I had a stroke. I had been complaning about headachs for years and a very stiff neck It got to the point that the headaches would not stop they would get lighter then worse but never be just gone. In them trying to figure out why i had this stroke they started a bunch of tests they said my heart is awesome so the clot was not from there. they did some blood tests i was sent to a Hematology doctor and this was what his repost said.... it shows you have performed a thrombophilia work-up and found her to be positive for lupus anticoagulantand to have a cardiolipin of 124GPL. he felt with that and other symoptoms i had that i had lupus sle i was sent to a Rheumatology doctor and his exact words were..... i am not impressed that she has a diagnosis of systemic lupus erythematosus this is particularly encoraging given the negative AMA. i have had 3 misscarages and 2 healthy kids i have suffered since about the age of 17 from being extremly tired the littlest things wear me out massive headachs that if i stand i will pass out massive neck pain and there is other little things that i didnt talk to them about because i thought they were trival like my nose is always bleeding when i blow and feels dry and sore i thought it was from where i worked dont know if there is sores never had sores in my mouth my back and stuff is often at a slight discomfort level and goes up and down but thought that was age so didnt mention that. I just want to know whats wrong and its now been almost a year of being run in circles i appled for AISH and have been denied because there is not anough suposting evadince of how bette i will get my youngest daughter is 10 and i am so scared of another stroke but just cant get any answers i want to be alive to see my kids turn 18

can anyone help my understand what the blood tests mean i wnat answers i want to know whats wrong with me im getting so depressed with this pain and fear

ty Terri
 

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Hi terri,
You mentioned Aish, are you from Alberta canada, if so which part cos i live in Medicine hat, and still waiting a diagnosis.
I like you are in a lot of pain amongst other things.
Big hugs, Hun.
You have to keep pushing with it.

Sandra.....
 

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Terri,

Given your symptoms and the results of your tests, it's possible it's antiphospholipid syndrome (APS) and not lupus, or it could be both. I recommend you learn as much as you can about APS as well as lupus. I think there is information about APS under the topic/thread titled Related Conditions.

Barb
 

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Yes I am in Westlock Alberta and cryed 2 days when they sent me the rejection letter I am trying to figure out how to apeal it i am a single mom of 2 kids and being in pain so much and now with semi paralisis in my left arm and leg the added trying to keep a roof over our head isnt helping and seems there is no answers as to what is wrong i dont know if the appeal will help it seems like i am refered to doctor after doctor and none can figure it out. So i will ask about this APS seems my arms even look like that picture but only when they are cold knowing a name might help my doctors look in the right place. and it does not help when you are in pain so much and the doctors ask what the symptoms are you dont think of things like dry eyes or blochy skin you think of those big things causing the pain. Also i pray this is nothing that my kids will get :( my oldest is cronicly complaining of headachs already and shes only 15. Sorry i joined the site and might not have lupus i hope i can stick around just couse its nice to be able to talk to others.

Terri
 

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OF course you can stick around Terri, sounds like you need some answers. Have you ever been referred to a Rheumatologist? It might be good to get some more investigation generally to find out what the diagnosis is. There is a list of critera and alternative criteria for Lupus on this site so it would be good to check that out, I would start logging your symptoms both written and anything photographic so that you have a diary of events for your appointments. Negative ANA doesn't always mean there is nothing going on and so the comment about not being impressed with a diagnosis of SLE from the people who should know better is equally unimpressive! Plenty on here will tell you that ANA is a good indicator of things going awry but not conclusive with either positive or negative that it is definitely lupus, there are many variables as people on here will testify. Do persue this so that you can get some proper care and onto some decent meds. You will feel so much better when things have settled a bit and you are a bit more in control of your health. Any questions get back to us, thats what we are here for :)
Claire X
 

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Hello Terri and welcome :)

There is no need to apologise for joining, that is what this site is here for, to help people like you who may have lupus, another connective tissue disease or a related disease.

Lots of people who come here just come looking for answers and we all understand how important those answers can be :hug:

I would agree with the others (also in the other thread) that APS is something that has to be looked into. It can exist alone or in conjunction with SLE.

I'm surprised with your symptoms that the rheumy you saw didn't think of it :scratch: It is certainly worth pushing for answers on that.

Don't hesitate to ask any other questions and keep us posted.

hugs :grhug:

Katharine
 

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Terri, just realised you said in your post you got referred to a Rheumy, but with that comment about neg ANA and therefore not SLE I would tread carefully with this one! It may not be Lupus but it shouldn't be ruled out quite so quickly...Might be good to find one that has a bit more auto immune experience..:(...all the best
 

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if you are repeatedly lupus anticoagulant positive and have high anti cardioplipin antibodies and have had clotting events (DVT/stroke/heart attack) most haematologist/rheuamtologist should diagnose you with APS/Hughes syndrome. If this is the case , then you would need treatment with anticoagulants suchh as aspirin and possibly warfarin. It is also called Hughes syndrome - there is a good website run from st thomas' hospital on hughes syndrome , please look at it and see if it sounds like you. Then go back your doctors!

I hope you get on alright,
Cathy x
 

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Hi Terri,
Welcome to the board.
I am going to give you a different spin from my own health history.
I am, and always have been, ana negative-20+ years diagnosed now. I am, however, positive for anti ds dna, acl, apls, sjogren's syndrome. I started to get migraines when I was 5, and had them all thru growing up, I was very sensitive to sun exposure and often would end up very ill for weeks post a long sun exposure. Anti ds dna is a lot more specific for sle than ana. Many other diseases also encounter ana's. If you weren't tested for these, why not?

I saw my rheumatologist yesterday. I asked how many patients he has who have come up consisitently ana negative. He has had two, myself and my first cousin. So, while it is not common, it can and does happen to some of us. [that rheumy's discount this fact, irritates me to no end.]

A diagnosis of lupus is made on meeting 4 of 11 criteria. This is with OR without lab work.

Lupus anticoaglant syndrome is a form of lupus. It can affect animals as well. My maine **** had developed this and had blood clots in his kidneys. A very astute vet caught the "casts" on a routine ua. We put him on anticoagulant therapy and he lived into his advanced teens. The (specialist) vet was amazed that I understand what he was talking about after a kidney biopsy. When I explained that I had lupus, and understood, he was taken back. Unusual to find lupus with an owner and a pet.

Can you appeal the denial of disability? Here, in the US, I would suggest you find a disability attorney. In the US it is routine to be denied at least once when you apply. The one advice I would give to you for the appeal, is to be as verbose as you can. The more info that you give, the more likely to be approved.
I wish you well in this.
Sally
 

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Hi Terri,
As i live in Alberta you can appeal the Aish, i've heard many people who apply get turned down first time, have appealed and have got it. So i would appeal it.
Also been told that sometimes it is the way the Dr writes his answers, that stops you from getting your Aish, i asked my Dr about Aish and he told me cos did'nt have a positive diagnosis i would not get it, so until i do i have to work part time. Which most days is so hard. APPEAL it
Good luck,
let us know how you get on
Sandra....
 

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Hi Terri

Just wanted to welcome you to the board. You have come to the right place for info and understanding, the site and the people are fantastic. I am sorry that you are having such a hard time. I think you need to heed what the others have said, I am really suprised your rheumy hasn't mentioned aps/hughes syndrome and that he has dismissed lupus. I have lupus and sticky blood, I also test positive for the lupus anticoagulant I am on aspirin after having a tia. The aspirin really helped me for quite a while. Maybe you could try to contact a lupus centre near to you for info and support? Maybe try taking some info back to your doctor. Don't give up and let us know how you get on.

Take care

Deb
 
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