Update on appointment in NYC

I'm sorry I haven't updated earlier. Last week was the last week of summer break here in Texas and I have three children at home. Rather than retype everything, I keep a blog and have a tab there labelled "health-n-progress" that goes into some detail. If you don't mind copying and pasting jen-n-progress.blogspot.com then clicking on the health tab you can find the latest and greatest there. Turns out my APS may have been a misdiagnosis. I was super impressed with Dr. Lockshin. He explained things much more thoroughly than any doctor I've seen yet so if you have unanswered questions here in the US it just might be worth the trip to go there. Every situation is different, I understand. I have more work to do to get answers but we'll see where this road takes us!

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  • Did you ask him about seronegative APS or Dr. Hughes suggestion of trying heperin to diagnosis seronegative APS?

    I hope he has set you on the right path. I saw a neurologist for 9 years. I also took a migraine preventative (gabapentin). But all he ever told me was to see a rheumatologist. Recently, I was told to go back and see a neurologist. I feel like the ping-pong patient. Meanwhile, I still can't read a book, and I feel like my mind is full of cotton candy that makes extended concentration impossible.

  • Please be aware that often there is a problem with diagnosis from a Neurologist, on what basis did they decide this? Please look at our seronegative section and also be clear on your symptoms and history to date. Make sure they look at vitamin D, B12, Iron (ferritin) and thyroid function also. I myself although having passed two of the tests at times am mainly seronegative. MaryF

  • I went to a specialist that talked one hell of a story BUT after a couple of visits it was clear he was a legend in his OWN mind . So i stand by understanding things yourself first . I have seen 27 Dc's in my 6 years and over 110 tests with over 80 visits and or appointments. So i have experience in this . Sometimes they don't really understand but to a patient that isn't informed themselves they can be lead down a wrong path . I am not saying you aren't knowledgeable but i am saying listen closely . I have talked to some people that have been lead down the wrong path , and not just with our complex disorders. With the first dc i spoke of { the legend } when i started asking him questions it was clear fast he wasn't as up on APS as he wanted me to believe he was .Needless to say i no longer see him .

  • I agree with the others above. Beware .......

    Good luck from Kerstin in Stockholm

  • Dr. Lockshin is not a neurologist. He is a rheumatologist/OBGYN that was hand-picked by Dr. Graham Hughes:

    Dear Ms Schriewer,

    Thank you for your email (please accept my apologies for the delay in getting back to you, i was away at the end of last week).

    May I suggest you contact one of my colleagues at the Hospital for Special Surgery in New York (Dr Michael Lockshin or one of his team in the Department of Rheumatology there). The whole team are well-versed in the antiphospholipid (Hughes') syndrome and I am sure they will be able to help.

    With very kind regards.

    Yours sincerely,

    Professor Graham Hughes

    Head of The London Lupus Centre

    He wants me to see a neurologist and get the MRI to make sure my eyes aren't the problem causing the headaches and to make sure there are no bleeding or clots in my brain. My blood work looked near perfect. No lupus, no other indications of APS in any way. No indications of APS on exam. My family has a history of strange bleeding problems that have not been diagnosed. During the hospitalizations that I was diagnosed with APS the hematologists were suspecting Von Willebrands. Vw is very difficult to diagnose and can give false negatives. I think that it is wise to retest for everything as I am not fitting the mold for APS. We may discover that I am seronegative APS but at this stage I don't think we should jump to that conclusion until we rule out other possibilities. I also have a factor 13 elevation which in itself is a clotting disorder. That could explain the DVT I had at the time of diagnosis. I will keep you posted. Dr. Lockshin himself is not saying that I don't have APS but he thinks that other options should be explored and we need to start over because things aren't "adding up". I will see a hematologist for that. I will also see a rheumatologist locally in October to follow up and correspond with Dr. Lockshin because I won't be able to go to NYC that frequently.

    I appreciate all the feedback. Up until this past year I really had no symptoms of anything after all the bleeding 4 years ago. I lived a normal life. I hope to have some resemblance of that again.

    Peace :)

  • And, Yes, I am reading the seronegative section. It is something I will be discussing as a possibility with Dr. Lockshin, the hematologist and the other rheumatologist I will see in October. I am not ruling out APS, but I'm not ruling out other possibilities either. I just want to keep working until I find the answer.

  • I also think seeing a rheumatologist is a waste of time. They prescribe steroids. That's pretty much all they do.

    APLS is a disease that needs to be treated by a hematologist. That's my not so humble opinion, of course, but I've seen every rheumatologist in NYC and one was a bigger waste of time than the next.

  • I saw Dr Lockshin not long after my APLS diagnosis 15 years ago after multiple PEs and a DVT.

    With all due respect, my dog knows more about APLS than he does. I advise you to run, not walk away.

    Everything he told me was wrong, including that i could safely keep my INR between 2 and 3. He told me I had MS, lesions in my brain, and some other things that were totally and completely incorrect.

    Sadly, my wonderful hematologist, Dr Stanford Kempin - who actually has APLS - has retired.

    I am supposed to make an appt with his replacement - Dr Caroline Cromwell - who is coming to Beth Israel Hospital from Yale and who is a coagulation specialist.

    If I were you, I'd see her.

    I haven't met her yet and should call. But I hurt my back earlier this summer (broke a vertebrae) and can only handle one crisis at a time.

  • Thanks for your comments. Please post after you see the new hematologist. I would like to be able to see someone within a reasonable distance to me that would evaluate me for seronegative APS. I have already experienced getting much better from heperin, but can't find anyone to let me try a heperin trial anywhere on the east coast of the U.S. As far as I can tell no one at HSS believes in seronegative APS, despite their good reputation with APS. Although, I have been checked for MS repeatedly, I have never had a stroke or DVt, so if you discover she might consider an someone who is "event less" for a heperin trial, please let us know. I am not the only one looking for help who isn't getting anywhere.

  • I'm sure if you fall within their strict criteria for APS, they would be excellent doctors.

  • I don't really think that's true about HSS doctors or rheumatologists in general.

    I would not want to be involved with anyone on Dr Lockshin's team. He's a legend in his own mind.

  • I will let you know how I like the new hemo.

    It took me 10 years to put together my team of drs, so Dr Kempin retiring is a real loss.

    He saved my life more than once.

  • Wow. I'm at a complete loss for words. I guess I'm one of those people who believes that everything happens for a reason. So I will continue to research, continue to ask questions, follow my intuition and and seek answers. Thank you for the input.

  • And I don't know how much you've read about me but I live in Texas...not NY so this was kind of a special trip so I'm not sure it's feasible for me to see anyone there on a regular basis. Lockshin definitely raised some questions so we'll see where that goes.

  • As far as I can tell, there are a tiny handful of hematologists who know anything about APLS and it may be necessary for you to travel here to get with one.

    I only saw Dr Kempin in person once a year. Otherwise, we emailed, talked on the phone. So really, the thing is to become a patient and go from there.

  • With all due respect, I joined this forum for help and encouragement. I posted many weeks in advance what my plan was (to see Dr. Lockshin at HSS) and I don't recall you (nyctapdancer) speaking up so I would appreciate that you spare me the negativity now. Every patient is different. Every situation is different. I have a family history of bleeding disorders that is coming into play here and I agree with Dr. Lockshin that things aren't adding up and deserve further investigation. The administrators of this forum suggested that I go to someone on the list and I went straight to the source himself: Prof. Hughes and he named Dr. Lockshin so that's where I went. So if there are issues with the Hospital for Special Surgery and Dr. Lockshin or his team then maybe the admin would want to investigate the referral but I was happy with the treatment I received as a patient and I don't believe this is a "one size fits all" disease. I believe there are lots of unanswered questions. I believe my story is still being told. I'm asking for support, not criticism after the work is already done and the decision was already made who to see.

    This is hard enough. I'm feeling quite fragile with constant headaches and a lot of frustration as I continue to wait for further tests and referrals to a hematologist and neurologist for more tests. I'm 39 with a 15 year old daughter, 13 year old daughter and 5 year old son still trying to work full time as a nurse and take care of other sick people. Criticism is the last thing I need and unrealistic options for doctors across the country don't help. Can we be supportive?

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