Newbie

Hi everyone I am new to the board and had a question for you all. Back in February of this year I found out I tested positive for Anticardiolipin Antibodies. I've had the test done two other times 3 months apart and they are still there. The last round were high positive. My current symptoms are extreme brain fog I really can't function I get confused easily I have twitching, forget things constantly and am just so run down. None of my Drs are addressing the possibility of APS. I've had so many tests and everything is coming back negative they just keep saying you need evidence of at least one blood clot to be considered having it. Meantime I'm just so miserable not getting any relief. I had one miscarriage before I carried two pregnancies to full term but it took a year plus to conceive. Are the Drs waiting for my to clot or have a stroke, it just seems weird that they wouldn't treat me with my labs showing high positive for the igm anticardiolipin antibodies. I'm stumped should I Persue another opinion? Thanks in advance for any input.

35 Replies

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  • Hi and welcome, you are right to be concerned. Are you in the UK, as we do have a list of specialists on our charity website: hughes-syndrome.org/self-he...

    Your GP can refer you to one in your area, or you can self refer privately to The London Lupus Centre/London Bridge Hospital, but you do have to pay for this option, if possible it would be better to be referred locally. If you need help to pursuade your GP take along your most trusted friend, colleague, relative or neighbour somebody who will strongly fight your case alongside you, you should not have to wait for something to possibly happen. MaryF

  • Thank you for the reply! I live in the States. I'm awaiting results of my second MRI and EEG. Hopefully I will get them this week. I also have Crohn's disease. I've had it for 20 years. I hear once you have one Auto Immune Disease you are seseptable to more :( my GP just wants me to take antidepressants she thinks it's all in my head it's so frustrating!!! Thank God for my neurologist, she's the only one taking me seriously. I went to her because of all the nervous system symptoms I've been having, my GP was thinking MS.

  • Hi get your Neurologist to check your levels of D B12, and iron also, plus your Thyroid which is often affected if you have this disease, also look for Sjogrens Disease, also many of us have problems with gluten! You do not have to have Coeliac disease in order to have some of the symptoms, gluten intolerance can cause real problems for those of us with autoimmune disease. I enclose this for you also: apsaction.com/

    Many patients rapidly improve when on anticoagulation, in terms of the neurological symptoms. MaryF

  • Are the D and B12 levels high or low with this disease? I'm in the process of getting diagnosed, my D level is super low and my B12 is super high.

  • Your consultants will probably want you to supplement with vitamin D and will prescribe accordingly and will also check your iron alongside your B12, and tell you the optimum level for all of these. MaryF

  • B12 is great my neuro checked my ferratin which came back really low, 7! I had an IV iron infusion to correct that. I thought for sure that was the fix but nope still have twitches, fatigue and brain fog :( my thyroid is also perfect. It's been a frustrating year for me. My Drs just keep saying nothing is wrong but there obviously is if I have these antibodies. They are affecting my whole life :(

    Thank you so much for the information I hope I can convince my hematologist when he sees my latest anticardiolipin values.

  • In what city do you live?

  • Sorry hear, I find hard same my tests come up high twice they refused test 3rd no clot.

    Not conceived struggling to.

    Hope your able get 2nd opnion as you've had miscarriage. I'd thought that can meet criteria aside fact no clot which I'm glad you havnt had.ive had few scares where go thought I had clot. In leg.

    All best hug

  • Ps my spouse has chrons diagnosed 2012. I have several auto immune conditions myself.

    Here to support

  • You need to have a Doctor who understands what APS is about. Too thick blood! The Neuroloists are not the best doctors to understand this disease we have found here.

    When you are anticoagulated at an INR-level rather high you will feel ok with your neurological issues.

    But the difficulty in your country is to find that doctor who dare to start you on an Heparin-trial and see how you get along when you are anticoagulated. I have heard so many telling us how difficult it is to find that doctor. Sometimes you must have a stroke before they understand. We have also microclots that are not always seen on an MRI.

    Good luck and hope you can convince your Hematologist!

    Kerstin in Stockholm

  • Sorry I'm so new to all this. What is INR?

  • INR stands for International Normalised Ratio- a world wide standard. Those of us on warfarin have a target INR which in simple terms is like a measure for how thin our blood is. A 'normal' person's blood would be around 1.0. We need warfarin to slow the clotting speed down . Someone with a (met target INR of 3, in simple terms, should take three times as long to clot as someone with an INR of 1.

    This is an oversimplification but hopefully it helps.

  • Were you tested for lupus anticoagulant? It is another marker for aps (not lupus, it's a confusing name!). Keep at it, good luck x

  • Yes, it came back negative. Do most APS patients have to have both markers? I just have the Anticardiolipin IGM antibodies.

  • Hello crogers, you sound so familiar as me, i also have crohns since I was 20 never had a miscarriage, but hard to conceive my second child. I've been tested once and my doctor knows I have it but have to go for second test this month but the doctors only have me on an aspirin and this disease started out with symptoms like yours but is moving to my joints and it seems my stomach but they can't find a clot so they don't want to put me on an anticoagulant. I truly feel for you. Where do you live in the States? I live in Houston Texas and still have a hard time with doctors understanding aps, it's so frustrating, I feel like they're not going to do anything and I'm going to end up with a clot. Have you tried an aspirin a day? That's what I'm doing but it doesn't seem to be helping but for some it does.

    Good luck to you and I hope you find a doctor who will listen to you and help.

    Amy

  • Hi Amy, I live outside Boston. Great Hospitals and Drs out this way. I need to find someone who specializes in this though. I'm going to try Mass General next. My Hematologist put me on baby asprin, one per day. Is it safe to try two? I'm willing to try anything at this point. You mentioned that your symptoms are moving. Do you still have the brain fog or did that subside with asprin?

    Christina

  • Hi Christina, the doctors are good here too except for this disease, my symptoms moved to other areas before I started the aspirin regimen, I actually take a regular aspirin 325 milligrams, you could try that but like I said it isn't helping me. You need to find a good hematologist and rheumatologist, it seems rheumatologist know this disease better than other doctors but they can't prescribe anticoagulants. Oh yeah with us having crohns I don't know how great aspirin is going to be on our stomachs, I buy coated but who knows.

    I hope this helps and good luck to you, keep me informed, I would like to know how it goes and the people on here are super nice.

    Amy

  • contact :THE NO.1 EXPERTS ON APS IN THE US/ LINKS NATIONWIDE hss.edu/conditions_top-ten-...

  • Hi Crogers -- I live in N.H. just outside Concord .

    One of the best Dc's i have had came from Mass General and they did have some good Dc's there . I had sent a young woman there and she did excellent there ..

    Don't know whom she saw there but I think you will be ok there .

    i have two types of tremors and muscle spasms that effect my entire body ..

    Hydroxychloroquine - was a great start -I am also on two types of muscle relaxers, and 3 narcotic's - not all meds work the same for all of us as we are all different . but mention them to your Dc's there at M G and make sure they are the one's that ar up on the APS . use the site others here have given you -- learn yourself and be aggressive.take the info with it - we are here for you to give you the best direction we can and to help you along --BUT getting the good dc. is your next big and important step for you next . .

    feel free to get back to me if i ca help any more . Good luck -- Jet and Casey

  • What's the Drs name at MGH?

    Thanks,

    Christina

  • I never knew whom she ended up seeing .

    and i have no way of talking to her but the best dc. i had came from there so that rhuematology dept. has a history . That's where i would start Christina

  • Thank you!

  • Hi again Christina, i forgot to mention to try going gluten free it helps tremendously with crohn's and aps I've heard, I've been gluten free for over a year now it helped me overcome adrenal crisis from prednisone. I just got my iron. And Ferritin checked both low now I have to do something about that, it seems you're getting a lot of good advice, best wishes.

    Amy

  • You are from the Newton area ?? you are the closest to me - i only have met one other sludge blood face to face and that is Kristina { Bailey } . She moved down south and the funny thing is , she grew up 5 miles from me and she was in Atlanta Georgia when i first started talking to her and then she went to England and i finally met her face to face when she returned and she helped me lots as Many of the people on this site have . I am rare one - APS triple positive , Primary male. --PM me and i will tell you more .I have 27 dia. health issues - most APS related, and the cause --- i have had 127 tests done since 11/2/11 up in Dartmouth Hitchcock Hosp. in Lebanon --Have you heard of them -- There is a DC up there that you could see it would be about 2 hours travel -- DC Chou is great --he came from MGH--!!

  • I'm in a similar situation (also in the states). I test positive for cardiolopin IgM as well as beta2glycoprotein IgM (had two tests 12 weeks apart). Supposedly, the IgG autoantibodies are a stronger positive (which I don't have). My lupus anticoagulant is negative. My INR so far is good.

    I've had one miscarriage (that I know of - complicated story) but not a clotting "event". Therefore, I cannot get an APS diagnosis.

    For now, I'm in a wait and see mode. I wasn't looking to go on an anticoagulant (like Warfarin) but just glad to be aware of this possible condition. I have Lupus and Sjogren's as well and currently take Plaquenil. I'm also on levothyroxine since I am hypo.

    So far so good. I've so much to worry about these days that if I dwelled on the "what if" I'd go insane. I do my best to stay as healthy and fit as I can and keep my rheumy, endocrinologist and GP apprised of my symptoms. So far, hematologists been useless (I've been to two) as none are APS specialists. I will have my rheumy test for APS every 6 months and will see how it goes.

    Your symptoms sound like you could be hypothyroid. I see a private endo who treats my hypothyroidism when no one else would since my labs were "normal". He saved my life and sanity as the very first day on levothyroxine I felt better. Of course, I then got the dx of lupus and Sjogren's which meant more meds and a year of getting used to it all. I may actually now be in a place where things are evening out.

    Have you had an ANA test? You could have some other AI disorder going on.

    I wish you the best. Take care.

  • I'm in Massachusetts btw. The private endo I see is Dr. Kenneth Blanchard in Newton.

  • My Thyroid TSH, T3 and T4 are all normal. My primary thought for sure it was thyroid issue but none of those tests were abnormal. Only thing so far is the IGM antibodies. MY ANA was negative too. She said trace but negative.

  • My thyroid numbers were "normal" as well, in fact, they were reading more hyPERthyroid but my symptoms were def hyPO, right down to losing the outer third of my eyebrows and the yellow-orange tinged skin.

    The basic ANA tests for a variety of things. I insisted I be tested individually for everything on the ANA to figure out which autoantibody I was testing positive for. Turns out it was anti-dsDNA. That was enough to send me to a rheumy who then did a full exam and took 14 vials of blood as well as a urine sample, assuring me I was "fine".

    Ten days later I get the lupus diagnosis. And two months after that, a secondary of Sjogren's. I don't have the lupus rash which every doc looks for. Just shows you that only YOU knew your body best. I KNEW something was wrong and pushed hard to get the right tests. I'm very glad I did but I did suffer for 2.5 years before getting my dx's and the help I so desperately needed.

  • Here is some good info. For the US, in the red column to the left, click find a doctor to see if there is one near you.

    apsfa.org/aps.htm

    It's not unusual for docs not "In the know" to write you off and for it to take quite a while for diagnosis. Read my profile. I too was out on anti depressants, but kept pursuing. I knew something was wrong.

    Turns out I did have a small stroke, but it had little affect on me and we blew it off as just a fluke thing that happened as we were on vacation when it happened and there were no other affects or symptoms.

  • Also have your docs check lupus anti coagulant and Beta 2 microglobulin. These are also tested for here in the US for APS/Hughes.

  • "Baby-Aspirin" is an antiplatelet-drug and do not thin the blood as Warfarin, Fragmin or Heparin do. I believe it is called "baby" as it helps with a small amount of aspirin.

    I started with one baby-Aspirin (75 mg) each day and that helped for some years and then my doctor wanted to try the double doze which was 160 mg (here in Sweden ). She actually said that she did not think it would help but she wanted to try on me as I then needed anticoagulation and started Warfarin later on.

    It did not help at all and I have not read or heard of anyone who has been better on double doze. It is a great risque with double doze to have trouble or bleeding from the stomach. Especially if you already have trouble with your stomach.

    When I started Warfarin later on it helped. Warfarin has no sideeffects except for bleeding if taking too much. We do not bleed but clot from APS as Prof Hughes says. I believe he is so right there as I have noticed that I have very thick blood. I have found that the Professor is always right anyway.

    Take care!

    Kerstin in Stockholm

  • My Neuro called yesturday and said they found something on the MRA but the MRI was clear. She wouldn't go into detail but is referring me to somone at Tufts in Boston, a Neuro Surgeon. My guess is it's a clot or aneurysm. My Primary is going to call me tomorrow with the full report. Am a bit scared but if it was urgent I'm sure she would have sent me to the ER right? So more of the waiting game here.

  • Hi Christina,

    If I were you I would be very careful now. They start to talk of a Neuro Surgeon!

    We have found here that the Neurologists do not understand what APS is about ....... very thick blood that needs to be thinned.

    i have had several Neurologists also. Please look for someone who is not a Neurologist and who UNDERSTANDS APS!

    You need anticoagulation and Aspirin is probably not enough. At least you must talk to a doctor who understands APS and discuss with him what the Neuro Surgeon wants to do. I would be very suspiscious.

    Take care!

    Kerstin

  • Christina did you ever find a good APS doc in Boston? I live in Jamaica Plain and currently go to Beth Israel but am looking for someone who really gets it. Thanks!

  • No not yet, I'm seeing a new primary this Friday. Hoping she can guide me with finding somone. I'm still a mess and all tests except my Anticardiolipin IGM keep coming back high. It's so frustrating because my symptoms are so horrible and all they have me take is baby asprin. I can't even get a diagnosis of APS because I have not had a clotting event so I am stuck in this horrible Limbo. If you hear of one please let me know.

    Thanks,

    Christina

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