Blood clot

Well I m still in the process of getting a specialist as I lie in my hospital bed. It seems very likely I have a blood clot in my leg. My fatigue has become life altering and I feel like I m drowning in uncertainties. I know there is not much anyone can say to help me here cause I don't have that specialist but I will say that this condition is hurting my family.

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  • Im so very sorry this is affecting you so badly. have you had no luck in finding a specialist yet? What part of Canada are you in?

    I know its difficult but please try not to worry took much, Im sure they are treating your clot as they should and the rest will be sorted when thats under control. Try and take each day as it comes and in the meantime we will try and see if we can find a name for you.

  • Actually I reached out to the lupus group in Ontario cnda and they have been amzing! Very supportive and they told me some interesting things. One of them is

  • Its always better to get local information if possible so Im glad they have been helpful. Im waiting with baited breath to hear about your interesting things!!

  • Is that LA is a symptom of Lupus. The nurse just came in and said there is no clot so now they don't know why my leg and foot are so swollen. This makes me so mad cause I just want to know!! They gave me a blood thinner last night and it seems to have helped a bit but don't know what to do now.

    I m so dam tired! The doc has me on a pills they give to people who suffer from narcolepsy to hop keep me ask during the

  • Keep me awake.anyway I was told that the reason for calling it LA is its link to Lupus. Basically we r one step from having full Lupus. I thought we talked about it here and was told it is not Lupus

  • They also said that no matter what if I m tired I must sleep because my body is saying I have to have it. So opposite from the sleep doctor who says don't sleep during the day.

  • The lupus anticoagulation test (LA) is confusing for doctors and patients. It is NOT a test for lupus (systemic lupus erythematosus/SLE), but a complicated clotting test.

    Approximately 25% of patients with SLE ALSO have APS/Hughes Syndrome. I am one. It was because Dr Graham RV Hughes was/is a lupus specialist, that he "discovered" APS.

  • The way they said it to me, which is apparently from the two leading specialists in Canada (?) Is that LA is a symptom of lupus. It does not have anything to do with the test. U r right from what I understand ,and I don't understand much, that we have been tested for something very specific but it does not mean it is not a symptom. At least that is what they said. I will say however that when intoldnthemmi was a part of this group they were very impressed and saidnyou would have info that they don't even have

  • *when I told them I

  • Hi Salmonious,

    I have LA( Lupus Anticoagulant) and it is one of the tree antibodies they always test for APS. It is not a symptom but a sort of proof that you have got APS.

    As Ross says 25 % of patients with SLE(Lupus) also has Hughes syndrome/Antiphospholipidsyndrome.

    You need anticoagulation and a Specialist which we as I understand it, is going to help you find in Canada.

    As APsnotFab says I am sure they are going to treat you for your clot and I am sure they know what LA is. Otherwise you could tell them.

    Good that your are taken care of in a hospital. I wish you good recovery and please let us hear how it goes for you!

    Best wishes from Kerstin in Stockholm

  • This must be very confusing for you because it seems that for these doctors, APS/Hughes Syndrome is not a separate medical condition, but merely something that a minority of patients with lupus have!

    According to a US Study (2016) 30-40% patients with SLE test positive for aPL:

    ncbi.nlm.nih.gov/pmc/articl...

    Obviously, treating patients who have SLE and APS, will be different from treating just SLE. However, to understand the clinical meaning, is complicated as the paper implies.

    IF you are interested, I have a paper written by Dr Hughes, (1997), where he lists 14 symptoms of SLE, to help non-lupus doctors in diagnosing SLE:

    Is it Lupus? - The St. Thomas' Hospital "Alternative Criteria"

    lupus-support.org/topic/253...

    This paper is written to help any lay person,including doctors, who rarely diagnose SLE, unless they are actively looking for it!

    You will need to create an account on the LuPUS Message Board/LUpus Patients Understanding & Support (LUPUS), which is necessary to stop the spammers and bots. Any difficulties, let me know.

    With good wishes,

    Ros

  • Hi. I took those narcolepsy drugs for a while but did not feel they helped much (nuvigil, provigil, and Ritalin).

    Nancy in West Virginia

  • I am so sorry to read of your struggles. Chronic fatigue issues are real, but the symptoms can not be measured externally. So, it can be so hard to relate to friends, family and health professionals because “you don’t look sick.” My! How I learned to hate that phrase! But you/we are not alone. There is even a web site: youdontlooksick.com. Check it out and read the “spoon theory.” Its not a cure, but again, it may help you feel the support that all of us other “you dont’ look sicks” are sending to you.

    Gina in West Virginai

  • My hematologist says that people with LAC ( yet another name for APS/ Hughes- )

    Can have the veins swell / inflame from irritation from the antibodies - along the vascular walls. They can swell shut - this can lead to a clot or not. But the vein can re open quickly. This can cause the swelling and discomfort while it was closed, or partially closed.

    Perhaps this is what happened. It’s a spasm of veins that’s not at all uncommon with APS and can be very hard to distinguish in untrasounds. ( between clots / spasms=swelling closed)

  • What fantastic replies, what a great bunch of comments. I think like the rest of APS and SLE Systemic Lupus sufferers. the cures are for you to find. Ask as many questions as you feel are important, start to build a picture and start to find what works for you. Speak openly your family. Show your family some of your replies. so they know others suffer the same.

    Eat well - stay positive - stay active physically and mentally even if its just a little a day. Remember. there is ever chance symptoms will settle and you will get remission, secret is to stay in remission !!!!!!!! For ever. !!!! if possible & good luck you can do it

    Linda Sunshine Coast Australia

  • The one thing I took home from my visit to the London Bridge Hospital was the Prof there telling me that even on my worst days, I wouldn't look 'sick' and my husband was with me to hear this!! On bad days (thankfully few and far between lately) I can just say I'm not well and go and lie down. My walk buddy also calls me the healthiest looking sick person she knows :) Right now the heat is getting me down a bit-gonna be 42 today and 45 tomorrow and high 30's the rest of the week.

    The other thing that helps me is walking-always in a better mood when I come home and feel a bit energized to do a few things around the place.

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