finally after much research, I think I might have found a doctor!!

I think I might have finally found a doctor that can help me find the answers I am looking for! As some of you may remember, I have been very confused about my symptoms and the answers my hematologist has given me, and the fact that my GP isn't giving me any answers either. After doing much research on my own, I have found 7 or 8 rheumatologist in Pennsylvania that deal with Hughes/APS. Now all I have to do is get an appointment with one of them that take my insurance. Until then, I do have an appointment with another rheumatologist on November 3rd. I just hope one of these doctors can soon give me some positive answers!!

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  • Hi Becca, Good luck with the new Dr's, I really hope they start giving you some peace of mind and answers!

  • thank you Jojo...I actually feel better just knowing that I might have found someone that can help. I also had an MRI done a week ago on my cervical spine to check the surgery site from a year ago to make sure that nothing slipped and could be causing my migraines, it was just as I thought..everything is good there. So my orthopedic surgeon is referring me to a neurologist for that.

  • I hope that the doctor you are going to see knows what APS is!

    As we have found on here there are very few of them and it is vital to have a correct judgement because other autoimmun illnesses like Lupus, Sjögrens or Thyroidea can also be connected with APS. A Specialist on APS understands the different symptoms.

    I am sorry to say but we have found that the Neurologists do not understand this illness so well. The specialists are often a Rheumatologist or an Hematologist.

    I can feel your positive mood and I do hope I have no destroyed it now because I only want to help you, Keep on looking and I am sure you will find that doctor.

    Many of us have had to fight to get a diagnose and a good treatment. If a doctor says "it is only in your head" (as some doctors say when they do not understand or know something). That is not true. The symptoms exist and we are not crazy!

    I wish you Good Luck and please come back and tell us how it goes for you.

    Kerstin

  • My appointment with the Rheumatologist is on November 3rd. And I am scheduled to have some out patient surgery preformed on my ankle November 4th. Should be a fun time for sure. I am also being scheduled to see a Neurologist, but don't know when that is going to be especially since I having surgery. I go back Monday to see the Hematologist to get the results of the blood work he had done 2 weeks ago. I am anxious to see what the results are.

  • A couple of us in the Northeast are finding if you haven't had a stroke or PE or miscarriages or very high titers of antiphospholipid antibodies, it is difficult to get treated or taken seriously even if you are very symptomatic, even at centers that are supposed specialize in APS. If you find anyone, please let us know.

    It seems as if many of the people here from the US have gone to London to be seen by Dr. Hughes or some of the doctors that he works with.

    I had a rheumatologist years ago that told me to take an aspirin a day to help prevent migraines, so he must have had it in his mind that my migraines were APS related. Since aspirin is over the counter you can always see if it helps you. I had many symptoms go away quickly with just aspirin.

  • It is really sad that it should be so very difficult to get a good doctor who understands APS. But we all know how important it is.

    I cross my fingers for you now here in Stockholm. Good Luck!

    Kerstin

  • It really is sad, and it is even sadder when we as patients have to do the searching for ourselves to fond a good doctor who understands APS.

    Thank you Kerstin

  • Well done on your proactive move forward, the best of luck with this, let us know how you get on. MaryF

  • Thank you Mary, I will certainly let you all know how I make out. I do have an appointment, finally, with a Rheumatologist on the 3rd of November.

  • Ok, now I am even more confused than I was before. I went to the hematologist to get the test results from the Lupus Anticoagulants and the Anticardiolipin antibodies blood tests that I had done a couple weeks ago. He told me that the Lupus Antibodies are going away? Is this possible? From what I have read, once you have this it doesn't go away. Did I read it wrong? I am so confused right now. He didn't even give me a chance to ask him what the levels were. He just about threw a hissy fit when I told him I was scheduled for surgery on the 4th of November. So he ordered a PT/APTT test to be done. I once again have to go back to see him on the 29th to get the results.

  • A classic APS diagnosis requires 2 positive blood values separated by 12 weeks time. Of course, as Dr Hughes has said. Sometimes, it's not that the patient fails the test, rather the test fails the patient. In other words, there are ' Seronegative" patients are those who have symptoms, respond to treatment, but do not meet the blood work criteria.

  • Gina, that is where I am confused. 2 years ago I had the 2 positive blood values separated by 12 weeks time. And now this new hematologist is going on 1 blood test? I am really, really confused. But yet when I told him I was scheduled for surgery in a couple weeks, he about went ballistic on me and ordered a PT/APTT right away.

  • I got the results of the latest PT/PTT from a couple weeks ago. I really do not totally understand what the numbers mean though. It says that the Prothrombin Time Protime was 10.20 (reference flag) Reference Range: 9.41-12.70

    INR 0.94 (reference flag)

    INR Reference range 0.9-1.1

    Moderate intensity warfarin therapy 2.0-3.0

    Higher intensity warfarin therapy 3.0-4.0

    Can anyone shed some light on these numbers for me?

  • Your test are basically in range for clotting. Your INR is a tint bit under, but I doubt anyone will worry about such a small deviation. If you are going to be in the hospital for any time tell them about your history for APS, because they may want to give you heparin.

    Sorry, you had a hard time with your doctor. I just don't understand why Doctor Hughes experience is being ignored in the US. Maybe ther has to be a big double blind experiment to get through to them?

  • Thank you for your comments. I thought my INR was a little bit under too. The hematologist did say that if my surgeon had any questions he could call him, but he felt that I should be put on something for a few days at least after surgery. I am having the surgery done as an outpatient, so I don't know. I am not on anything at the moment.

    I don't understand why Doctor Hughes experience is being so ignored here in the US either, really frustrates me because everything makes so much sense.

  • Before your operation on the ancle please look at our question here some days ago on "Bridging with Cessation of warfarin". I live in Sweden but I know it is important to not take warfarin away if you are going to do an operation. Look also on what Timw47 wrote.

    Best to you!

    Kerstin

  • I will look at that question Lure2. I do know that I am not taking any Warfarin or anything like that at the moment.

    Thank you!!

  • OK. As you told about your INR I thought you were on warfarin all of a sudden! Then there is no problem to stop warfarin.

    Goood luck on Tuesday! I am sure the doctor is taking responsibility and that it will be ok.

    Kerstin

  • Thank you Lure2. I was to see the Rheumatologist Monday afternoon. I explained what all was going on and she went over all my recent lab results. I explained to her what I was told my the 2 hematologists and she said she is somewhat familiar with APS and also with the Lupus Antibodies. She said that although I have the antibodies given the fact that I have not had any blood clots, but I have had 2 miscarriages, she will keep a close eye on my levels and be sure nothing changes. She really took her times and listened to me, which is something I really needed. Now I am off tomorrow morning early for my surgery. Always nervous about that.

  • With all your work now I am sure the doctors keep a close eye on you especiallly tomorrow.

    I am sure Everything will go just fine.

    Please keep contact Becca so later on after the op you can have a drug that suits you by this Rheumatologist if she knows APS well.

    Well done Becca and Good Luck tomorrow!!

    Kerstin

  • Just now got home from having the surgery. Thankfully everything went well. The surgeon decided not to put me on a blood thinner at this time because the PT/PTT levels weren't that high, but of course if I start to show signs of a clot he will do something.

  • Hi Becca10,

    So glad that the Operation went well and you are home and safe.

    Please follow the doctors advise if you are showing signs of clotting.

    Good wishes from me

    Kerstin

  • Thank you Kerstin for the good wishes. So far everything is going well. I did on the advice of my family doctor, start taking a low dose aspirin once a day. I got some bad news from my new insurance company about the medication my rheumatologist put me on. It is not on the formulary for the insurance. Of course it wouldn't be, I found something that works, go figure. No I have to call her on Monday and see what else she can give me.

  • Names of docs in Pa? Still having trouble making an APS specialist appt!

  • This post is from 2 yrs ago?

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