Misled and Upset

So I had my appointment with Dr Daniel Wallace in Los Angeles. He is an associate of Dr Hughes as they are both Lupus specialists.

From the Hughes support website I was under the impression that there was a "mild" APS that caused a myriad of symptoms but no thrombolic events. There have been people on this forum who claim they have been treated with heparin/Coumadin/plaquenil DESPITE never having a clot, and that Dr Hughes even treated patients with no thrombolic events AND were sero negative for APS or cardiolipin.

So I felt confident when I made this appointment, but when I discussed this with Dr Wallace today, he said that A) my positive cardiolipin was too low to be significant and that since I had no clotting event there was no reason to treat. He even went one step further and told me that Dr Hughes would never treat someone like me either. Even though when I emailed the clinic I was assured that they treated cases like mine.

It has been 12 years since the onset of my symptoms and 3 years since I've been researching APS/Hughes and looking for anything to help.

He blew away all my hopes in less than a minute, and it cost me $500.

I just don't understand this...

16 Replies

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  • Oh you poor thing. Please do not give up hope. I'm sure there will be someone on here who will be able to offer you advice. God bless.

  • I'm sorry you've had such a bad appointment. I've seen many Drs who have left me in tears and distraught. You must keep going and searching for answers. Don't give up hope x

  • Hi there, this must be very disappointing for you, I notice in a previous post that you had responded initially to Aspirin and your physician at the time felt you needed more help, and also how you were acknowledging that in the states the criteria for treatment having not had a clotting incident made transition to the next level of medication unlikely. This is a frustrating situation we understand. I myself took years to get the right treatment and I have had clotting incidents! Please do not give up hope. Are you still on LDN and Nattokinase?

    MaryF

  • I guess what disappointed me the most was that this doctor assured me that Prof Hughes would NEVER treat a patient with heparin or Coumadin UNLESS they had a high test result AND had a clot. He spoke on behalf of Dr Hughes and said "No way."

  • Let's take this in stages shall we? First of all I want to say how sorry I am for your experience. Dr's in the USA I am afraid to say are notoriously difficult to get to treat patients with Anticoagulation if you are seriously negative or if you have low positive results. They also don't tend to look at the whole picture and treat on blood results only because of your litigious society and insurance company rules.

    You say Dr Wallace is an associate of Prof Hughes because he is a specialist - did Prof Hughes recommend him? You also say from a "Hughes Support website" you understood there was a mild condition that caused symptoms but no clotting. Which website was that -Do you mean this one?

    I think it's true that Dr's in this country, Hughes specialists, have treated patients who are seronegative, diagnosed them with Hughes, given them a trial of heparin to see if symptoms improved before they have had a clot because they are not going to stand by and wait for them to have a clot first if their overwhelming symptoms, medical history, family history and associated other conditions are telling them the patient needs to have the treatment despite their blood test results!

    I myself did not pass any tests for this disease at first but had a DVT, PE and a stroke! Would Dr's in the USA simple take me off Anticoagulation because I don't fit the criteria? I have since tested positive highly to antiB2GP1 and LA and I have now been told there is no point in continually testing my antibodies as they have a diagnosis.

    You need to find a Dr who IS prepared to look at you as a person not as a blood test. I'm sorry that you are so disappointed I would be too in your place but I would complain to that Dr in my own words by sitting down when I'm calm and writing to him explaining why he had upset me so much. What do you have to lose? Be polite but ask what does he have to lose by treating you with a trial of medication. Do your homework and enclose studies that back up your case. This is the only language some Dr's understand.

    If this does not work then know he was not the Dr for you and move on. You need someone you can work with and who respects you and it can take time to find. Plough your disappointment into a positive outcome. We can help where we can. Stay strong. X

  • I have to say along side my own reply to you, and yes I feel your disappointment, I do also agree with this reply also ehc918 as somebody who has been through the mill both for myself and my children until common sense prevailed, and yes I was seronegative at the beginning but now repeatedly pass two out of the three tests, you have the will and the articulation to fight your case, best of luck. MaryF

  • He is as associate of Prof Hughes meaning they see each other several times a year (I assume at conferences and such) and said that he knows him very well.

    On the Hughes support website APS-support.org.uk there is a "mild" form of APS described.

    The most frustrating part is that there are supposedly patients seen by Prof Hughes who were treated with heparin DESPITE having a clotting event, but this doctor said there is no way Prof Hughes would consider that. He was very adamant. So I don't know what to believe.

    This doctor has a mug on his desk that says "don't mistake my medical degree with your google search"...clearly he isn't open to any information I could provide.

  • Some patients in the UK are given a trial of Heparin if they have very bad symptoms and are not passing the tests temporarily. MaryF

  • My understanding is that Prof Hughes has treated patients without clotting incidents and without positive tests. That he had given heparin and coumadin based on symptoms alone including migraine, fatigue, headache, brain fog, memory, pain, IBS, etc.

    So now I am curious whether this is true or I am misunderstanding.

  • At times with serious cases people are given a heparin (trial), out of interest are you gluten free? MaryF

  • I also live in the U.S, Washington DC to be exact. Back in 2005/2006 I consulted with the heads of hematology at two major medical centers (Georgetown University Hospital and Washington Hospital Center) regarding my condition. I had complications during my first attempt at open heart surgery in December 2005. I got nicked in my carotid artery during surgery and it was observed that my blood was acting strangely. I developed a hematoma that had to be extracted by a vascular team. Hematology was brought in to do a work up on me. One hematologist felt I did not meet the criteria for APS. They said the hematoma did not count as a clotting event. The testing at the first hospital was getting mixed results. It was showing I had a clotting AND a bleeding disorder (something to do with Factor 11). I went for another opinion to the second hematologist and his lab ruled out the bleeding disorder. He felt comfortable with the APS diagnosis. The two docs know each other and were in touch frequently about my case. Because I had my mitral valve replaced, anticoagulation was the protocol so in essence it killed two birds with one stone. In Mary F's first reply she referred to a post by you about aspirin and your physician feeling you needed more. Did this physician give you the referral to see Dr. Wallace? Ask your physician if they can refer you to someone else. Please don't be discouraged. I ended up continuing with the hematologist who diagnosed me with the APS and have been well managed since.

  • I am really wondering if there is cabal of APS specialist who would like to erase Dr. Hughes work. I have also seen Dr. Hughes send people to the same people. At the respected center I went to in in NYC I asked a resident straight up did any of the big shot rheumatologists believe in seronegative APS I was told no. I have read their articles and they say neuro symptoms in APS is controversial, they don't believe sticky blood, no APS with blood clots. And this is from no research, just their belief and perhaps fear. Finally, I found a rheumatologist who lived near my brother who was willing to see me. I showed the resident I had been seeing articles of Dr. Hughes, and low and behold, she thought my suspicion had merit and encouraged me to see the doctor who was a colleague of Dr. Hughes. She found I had a secondary antibody, and started treating me with Plavix and Elaquis. When I looked up for information on the antibody, I came across an article from my former hospital. It said, we know this antibody is an APS antibody, but since we don't understand it, we don't even test for it.

    I feel certain that things will change. There will be doctors who really want to help their patients rather than living by a rule book. In the 80s a Doctor treated me with plaquenil for my lupus like illness. It was controversial at the time. Now trials with plaquenil and prednisone are common place (although some rheumatologists won't do them either).

    It seems like every rheumatologist has his or her own opinion. You really have to just keep trying and develop a thick skin Enough high rheumatolgists have told me I have autoimmune disease, so that no one can tell me I have "just fibro" or I'm depressed (based on nothing at all.)

    So,eyimesi worry that these other doctors are winning, but I still believe sooner or latter truth will out.

    Good luck. Perhaps everyone in the US should contact a perspective rheumy and ask them "Do you treat people with no blood clots and seronegative APS." If they don't, run unless you have great insurance and lots of time and energy. Good luck, but don't despair.

  • That doofus talking to you like that says everything about him and NOTHING about you. I was diagnosed in 2004 and been ok more or less. I had a blood clot somewhere around 2008 and have been on warfarin at times and other times I've been on levenox injections. In May 2016 I had a heart attack. It was surprising as I didn't have too much additional misery other than the usual and I was seeing my primary care doctor because of heartburn (I thought). I had a wonderful cardiologist who tried every test possible to see why I had a heart attack, and all he came up with was the APS diagnosis. So I saw another hematologist since I was in a hospital where my hem dr. didn't practice. I saw him the day after I was released from the hospital at his office next door to the hospital.

    He came into the room and said he did not support the diagnosis of APS because he only diagnosed that condition in heart attacks if the blood was drawn during the heart attack. He said the medical record did not support the diagnosis. I asked him what record since I had not released any records from the past ten years because I was busy being in the hospital and having a heart attack. The record he was looking at was the forms I filled in by pen when I arrived at his office. And I am a sloppy writer.

    I was a bit confused about having blood drawn during a heart attack since I DID NOT KNOW I WAS HAVING A HEART ATTACK. I asked him if I had another one, should I just call him at home or what. He got snippy and I got more snippy. I then said to him that I was there because the cardiologist sent me there to get to the bottom of why I had a heart attack because there seemed to be no other cause. He said that is question for him. That is when I got my purse. I said that is why he sent me to YOOOUUUU! Beyond annoyed I said I will be getting my copay back. He then followed me out saying he did not mean to offend me and I said too late, if this is how you talk to patients no wonder your waiting room is empty.

    At the end of this, he is yelling at me to take aspirin 81 mg a day. As God as my witness, I started to laugh. I said Dave, I don't think so. Cause when I drop dead from my next heart attack, I would very much like my son to own that loaded BMW over there in your parking spot.

    I don't care how smart a doctor is, don't think we are not as brilliant about our conditions cause we are the ones trying not to die from it. Never allow a doctor to speak to you as anything other than the partner you are. That coffee mug you described is about the only thing you need to know about that man. If Dr. Hughes is the same way, maybe he should give up having copyrighted the name Hughes Syndrome. Men of science should never ever turn away a chance to bring in another patient if for no other reason than additional data to shed light on a condition still clumping along in the dark. Maybe one day we will have our own charity walk or something. Honestly the day HOUSE featured APS on one of its shows, I was elated. Cause we are suffering physically and emotionally because of the lack of knowledge and understanding among doctors and employers and the public.... It is a cross on my back I would never wish upon anyone. We want help and we don't deserve that kind of humiliation.

  • Hi Karen,

    Strong written in every aspect!

    Where do you live?

    I also wonder if you have read "Sticky Blood Explained" by Kay Thackray. Shes has APS and also angina-issues. I have primary APS and am selftesting with an INR between 3.5 - 4.0. I live in Sweden and have a Specialist, in fact two of them.

    Kay writes in her book that here angina need an INR at 4 to be ok. I have Primary Hypertension and leaking heartvalves today but I wanted to tell you that we need a Specialist and I know how difficult it is for you in the US to see one. Also most important to get the INR up to around 4.0 or even higher for some of us.

    I hope you have found a Specialist today but if not put a new post on here and ev you will have an answer where you could found your Specialist.

    See to it that you do not go around with too high bloodpressure as that could be a symptom of APS. It was for me and gave me micro-PEs that were not seen on Scans etc and now I have Pulmonary Hypertension. That was before Warfarin.

    We have too thick blood and do not bleed but clot from this illness. The Doctors know nothing about it and do not want to know either (some of them) as it could be trouble with bleeding etc.

    Best wishes from Kerstin in Stockholm

  • My INR was 2 when I left the hospital. I don't feel hopeful at all and I just can't continue this hassle. I will certainly read up on the author you mentioned. Thank you for your response.

    FYI, I did write a strongly worded letter because there should never be a time when a patient should tolerate a doctor behaving in such a condescending manner. Never. We are not deluded hypochondriacs. If I am on my own in this, why should I tolerate that rude behavior but most important: why should I pay for it? After a decade of this, I won't.

  • I have had similar problems with the drs. In the US. What I have learned is they do not know much about Hughes/APS syndrome & they do not want to give the blood thinning medication unless you have 2 different blood test that are positive. They have a criteria & almost all of them stick to it. Before going to London to get help I called the Hughes/APS Center in New York. I was told I needed 2 blood test to be positive. When I was first DX with APS I had a positive blood tests but now they are negative. I have had a PE, several miscarriages, bowel obstruction, ruptured appendix, etc....The drs. In the U s refused to give me the medication. That was when I saw prof Khamasta. He said I had the history to support the DX. Unfortunately I waited to long before going to London to get confirmation on the DX & treatment. If you can I would go to see Prof. Hughes in London. He is brilliant. I see him once a year. He is always right & the doctors in the US are wrong. He doesn't need the test to tell you what is wrong, but the drs in the US do to prove them wrong & Prof Hughes right. The dr here had me prepared that I had arteries blocked in my heart & may need surgery. I spoke to Prof. Hughes & he told me I had syndrome X. The dr was shocked she found no blockage. That is just 1 example. They just do not know enough about the syndrome part of APS. Designer 16

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