Sooo........ Did you know the only problem APS/Hughes causes is clots?!?!?

Yep.... That is precisely what I was told by a new doc I saw today when we were discussing lupus and APS...

Imagine that!

I told him he was very much incorrect and there were a LOT of things it could cause and began to tick them off..... Migraine, seizures, fogbrain, GI symptoms, weakness and stiffness etc, etc.

I had been trying to explain that I wasn't fully convinced I had lupus because many symptoms overlap and strongest titer I know of was 1:80 speckled pattern. I went on to say that I did know APS hasn't been implicated in the dark patches of skin and malar rash, and lupus was known for both though.....

That's when he said that APS doesn't cause any symptoms and all problems are related to complications of clotting in APS!

Needless to say I am VERY thankful that this doc isn't my primary doc, was just seeing me as a followup to my ER (A&E) visit last week and ongoing issues.

Regardless I asked him to read up on it in the most polite way I could and he is referring me to a rheumatologist and they will be helping me obtain the lovenox I need to be taking daily....

And he also gave me antibiotics for the tick bite I got a month ago.

19 Replies

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  • Sigh.

    Gina

  • Kinda my reaction to his comment!! I was sooo calm and polite about it.... Makes me think I may be growing up a little bit, lol!

  • Where are you from? I'm in Canada. I got my diagnosis thinking it was the final piece to the puzzle then hit a brick wall with the Hemo. I get so flustered. When I was pregnant I was sent to a hematologist who is supposedly an expert. He said that the seizures, migraines, visual disturbances etc aren't something that could be related to APS. Raynauds has no link to APS and the blood clots in my lungs were provoked so they don't mean I have APS. And 2 positive bloodwork results were coincidental. He took me off heparin said I don't need it and that he doesn't feel I need any treatment. I miscarried a week later.

    Now I am not on any meds, waiting for an appointment for a second opinion.

    I pretty well give up on the medical system here. Maybe the coroner will figure it out. I am glad you have a good GP. I feel like my GP is afraid to make any calls on his own. He is trying really hard but he is trying to play it safe by doing nothing and that is reckless.

  • Hey Sassy

    So sorry to hear of you miscarriage to what it sounds like incompetence....It may have been preventable. HSS in NY published this article you may be interested in reading and passing along.... hssonthemove.com/can-people... Dr Lockshin is a major APS researcher... I have been there to see him.

    My daughter asked her OB GYN to test her when she was preggers but they had never even heard of it! She has had a hx of unexplained seizures and other symptoms that could be APS, too. She had the baby emergency C section and baby was underweight & small but healthy (thankfully).

    This guy was French so maybe French Canadian!! I am in New Hampshire so possibly close to you? Spent a lot of time in Montreal.

    I am not sure my new GP is good yet- I haven't ever met him. BUT... I am connected to some very good docs including the one that diagnosed me is now within the same practice umbrella- I just need a referral to see him now!

  • Can you sue in Canada? That Doctor should be struck off in my opinion have you made an official complaint? I'm so sorry that you have had to go through that ordeal.

    I was reminded by another part of the Hippocratic Oath today apart from the bit that says I will do no harm. It says "I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeons knife or the chemists drug". Do Doctors just say those words for the sake of it I wonder?

    Please know that our support is with you in any way we can help. We just have to keep on at it in the hope that we can make a difference. X

  • Some times you just wonder why

  • Agreed

  • I suppose it just goes to show you how important advocacy and awareness is!! I am SOOOO sick of being lupus' red headed stepchild- it is time APS has its own recognition AND a cure!

  • Firstly, I am so sorry for the loss of your child. I agree with Lynn! You should write a letter to his superior and copy the hospital president because, unfortunately, malpractice speaks louder than you do. This doctor must be re-educated and/or suspended as his ignorance in removing medication while you were pregnant probably donated to the loss of your child. That loss, the hospital takes seriously as that is what malpractice is made of. Some doctors get a real "God" complex and are very cavalier in their attitudes and therefore actions. You having to educate him is inexcusable. His superior should explain just how many serious mistakes he made with your case, just because he was playing it safe or afraid to learn new information or admit he did not know. His reasons really don't matter. Your lost baby does.

    The very first oath he took in mediicine is "DO NO HARM". Well, I would say you are harmed! Doctors need to police themselves and get the bad doctors out of the system. In all fairness, they can only do that if they are aware of a bad doctor. Then there are policies in place for the reprimand of that MD. Please, Kristina, don't enable him to do this to someone else and their baby. You can write a letter to his superior in a constructive criticism attitude stating you write with the expectation that your actions will stop this from happening to someone else. If you neglect to do it, it's certain to repeat itself until someone stops him. Be the one to bring attention to this deed. You could be helping many women and their babies other than yourself.

    Again, accept my sincere condolences on the loss of your child. Don't give up on medicine. Just THAT doctor. Don't allow yourself to be a victim. A letter documenting his actions is a very positive thing to do for yourself and others. And it might be grown up, too!

    I send you strength and prayers for you and your lost baby.

    Canary

  • Yeah - - sad but true. I'm so stiff when sitting for a period of time. Why would this relate to the antiphos?

    Jean

  • Hi Jean,

    I get stiff as well- takes me forever to get moving in the morning and never thought about it until the doc asked me how long it typically took me to get moving in the am.... I realized it was generally 1-2 hours which sort of shocked me after thinking about it!

  • Hi Kristina,

    It used to take me 5 minutes dressed and out the dor. Now it's at least 2 hours and then the hope I have the energy to get out and going. So I know the feeling.

  • Hi Jean and Kristina

    I too get stiff and take ages to get going in the morning. I have Aps with just about every complication as it took years to diagnose. I had put the stiffness and snails pace in the morning down to arthritis in my lower spine but I guess it is down to the Aps or lupus as my sister has lupus and she takes forever to wake up, get up and function too.

  • Kristina,

    Heck is not the first word which comes to mind. Do you know that they 'guess' 40 percent of all doctors misdiagnose? I'm sorry you had to go through this. But glad for the way you handled it. We, as patients, must be our own advocates.

    I have just learned my cancer has most likely returned. Had it last year, kidney. Have been complaining to my GP for 4 months about symptoms and she denied anything was wrong and even denied my request to see a kidney specialist. Well, well..... it seems it is in my bladder. Will be told next week, but just got the call this morning that the results of my test were abnormal, and the ct urogram was to check for cancer. Yeah. Yeah.

    By the way, I self referred myself to this urologist.

    Know this has nothing to do with APS, but everything to do with how doctors treat us. Am I mad? Yes. YES.

    All the best with your rheumatologist.....

  • I am so sorry to hear of all your complications. I used to be the Patient Advocate at a local hospital and I always told the patients that they are their own best Advocate.... You know what you are feeling better than anyone else. Remember the squeeky wheel gets the greese... so squeek up...... demand attention... I do understand... I have SLE and APS diagnosed 6 years ago....after a PE.

  • Thank you very much. Have not told any friends, etc., yet - about this. Am waiting and, well, appreciate your words. And, yes, I have been squeeking very loud, it just all takes time.

    What is a PE??

  • This is exactly what I was told when I was diagnosed with APS 7 years ago prior to a gastric bypass surgery and 7 years after a full-left-side-loss stroke (at 23). My problems are often varied, sporadic, and 'unexplainable'. I was told absolutely nothing other than my blood was prone to clotting due to APS, and had to discover the fact that it is an autoimmune issue on my own. I was actually told initially that I had Lupus, and the cardiologist that diagnosed me later recanted and said it was APS instead. Recently, after a 5 week period of total physical craziness where I documented every ache and bit of strangeness, I finally got my regular doc to refer me to a Rheumatologist, despite a negative ANA test... Hopefully some insight is on the way!

  • I have been diagnosed APS positive several times. Now I dont know whether I have it or not?

    I get all the symptoms imagineable,last for weeks, really terrible. I refused to go on warfarin because I tend to collapse with strokes,so am on Persantin,whch they use for doing heart scans.. It is an anti-coagulant.

    I get electrical charges through my head, faintness, balance and memory problems, often get TIA's,feeling nauseas, Back and neck pains. Sleepiness. I dont go to hospital with them now, just keep my fingers crossed that I will recover.

    Some doctors still ask me, "what is that?" (APS).

  • Hi, You mentioned a tick bite! Is Lyme Disease in your area? Have you been bitten before?The symptoms are very similar to Lupus and can be treated by a very long course of Anti-biotics.

    Just a thought. All the best

    Les x

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