New Jersey & NYC ALS and Lupus People

Who on this wonderful site is from NJ or NYC (hopefully Manhattan)? Someone contacted me from NJ and I accidentally deleted their post before I replied. I'm interested in sharing information with not only this but with someone closer. I'm in Manhattan near the George Washington Bridge.

Thanks. It's a nice sunny day today after a couple of rainy days.

16 Replies

  • I'm near New Paltz, but a lot of my doctors are in the city.

  • Where are your doctors Ann. I live close to Presbyterian Hospital but just started with their doctors about 10 months ago. My internist is there, my rheumatologist, cardiologist and neurologist (don't have to see him regularly like the others). I believe I'm getting good care there, but am disappointed that there are no support groups and not a lot know about APS.

  • My PCP is nearby. My rheumy is at Hospital for Special Surgery. I go to Weill Cornell for brain fog issues, sleep issues, and heart issues. HSS specializes in APS, but they don't believe in seronegative APS, but if you have high titers of the antibodies and an "event--stroke or miscarriage," I expect it is a good place. They are treating me for lupus-like UCTD, which used to be lupus, but I am ANA negative now. No one tells me to stop taking aspirin, though, which does help with some of my neuro symptoms.

    It would be easier for me to get to Presbyterian, but if they are not good at APS, I guess I wouldn't change, because I keep asking for a heperin trial and can't get one.

  • Wow, my ANA is now 2560. It was 320, had a stroke on 3/1/14 and it went up to 1280 then I was diagnosed with APS after stroke. Now I was recently told I have inactive lupus. I don't know what they mean by that. I guess I have the symptoms, etc. I also have UCTD and didn't know that it used to be Lupus?? I'm on coumadin and hydroxcholoroquinine.

    Weill Cornell is part of Presbyterian. What is your rheumatologist's name? My rheumatologist is a lupus specialist but not specifically an APS specialist.

  • I go to their Medicaid clinic, but when I was still on insurance, I saw Dr. Ann Bass, who was very nice. I have heard good things about Doruk Erkan. Both of them have written papers on APS. They are both at Hospital for Special Surgery all the way on York Ave.

    I didn't mean Uctd used to be lupus. In my case, I was diagnosed with lupus, but now they are calling it Uctd because I don't have ANAs.

    HSS seems to be seperate from Weill Cornell, but HSS refers me to Weill Cornell just since they are in the same neighborhood.

  • I think it was me.

    I am from central New Jersey--near Cranbury, and not far from Princeton.

    My vascular doctor is in NYU Hospital in NY. My others, cardiologist, internist, hematologist, are in New Jersey.

  • Hi Mozelle: I live in Manhattan near Presbyterian Hospital where my doctors are. I have always been a healthy woman who worked out at a gym, etc. I'm 68 & retired 3 yrs from teaching. I had a stroke on 3/1/14 and lost my speech for awhile & was then dx with APS and Undifferentiated Connective Tissue Disease. I'm on Coumadin and Hydroxycholoroquinine. I've recently been dx with "inactive lupus." I'm feeling good lately. I live in a 5 floor walkup and get a lot of exercise that way too. Does NYU have good APS Specialists?

  • I am treated in East Brunswick NJ by a hematologist for my APS. He deals with it and he is the one who diagnosed it and also Factor V Leiden. But prior to that, I was diagnosed with 3 DVT in my right leg by a vascular doctor in NYU Hospital. (Also, 15 years ago with a DVT in same leg) He is the assistant chief of vascular surgery there. Per my hematologist, I have a "double Whammy" due to the two blood clotting conditions. I see him every 3 months and he does extensive blood work--(sooner if I have a problem) and I see the vascular now every 6 months. I self test for my INR every week and the hematologist's nurses deal with my warfarin doses.

    My hematologist sent me several weeks ago to a rheumatologist and I am waiting for results of the blood work he did. My son went to a hematologist in NYU hospital several months ago to be tested because the Factor V Leiden is inherited. Luckily, he tested negative--but I think the doctor he saw deals with APS. I guess you can call the hospital for a recommendation.

    I am retired from doing accounting for 15 years now.

    Good luck.......

  • Hi: How did you get approved for self testing. Tell me more about that. You've definitely had a hard road. I have a friend in her 50s with Leiden factor and many people in her family have it. Glad your son doesn't.

  • My hematologist gave me paperwork to fill out and he submitted it to Medicare.....they approved it within notified the company ALERE...a trainer came to my house with machine...trained me for about 2 hours...and that was it. You said you are 68...I assume on Medicare...if you ask your doctor who monitors your warfarin he should approve. ...I test once a week and its so much easier than driving 30 miles each week to doctor. ..

    By the way, one son tested negative for leiden and APS--but the other one is stalling and I'm urging him to do it..he has a teenage daughter and if he has leiden lhis daughter has 50% chance of having it...

    My doc told me if she has it she can never go on birth control pills...

  • Good morning Mozelle. I have a managed care plan--HIP Medicare. I'd have to check into see if they allow self testing. I believe with the machine the doctor get the results automatically?? Then they adjust your warfarin? My INR has finally regulated and hovers around the 2's - low to high-- because I've more or less learned what to eat and what not to eat. Thanks for the info. Have a great day.

  • Hi Loretta...I call the results in to ALERE and they fax them to my Dr. immediately. My prescribed range is between 2and 3.

    If within range my doctor doesn't call.

    If out of range I get a call from one of the triage nurses in his office and we work on it together... ie: warfarin dose, veggies.....they try not to change dose but have me adjust with K veggies.....this week was 3.5 so they lowered dose for one night. Some drs. call whether INR is in range or not. Mine doesn' self testing you have more control of your health.

    You have a great day too.


  • Thanks. That sound wonderful. You have great care. This morning I'll take the 20 block (1 mile ) walk down to the hospital to get my blood drawn. Home testing and your particular situation sounds so much more sensible. My doctor calls either way. I also tried to get my daughter to get tested for APS but she doesn't want to do it either. Our kids should get tested. Be well and enjoy this beautiful day.

  • Hi Loretta

    Thanks for your reply. I was in "your town" these last 3 days, visiting my sister in NYC. She lives across from Lincoln Center and we took advantage of the events nearby.

    Unfortunately, at this time, I am unable to take long walks as I have been getting spontaneous fractures in my right foot. Just came off the 'boot' 2 weeks ago. (That's why my hematologist referred me to a rheumatologist to see if there are any other underlying conditions besides the APS and Factor V. ) So, we took the buses--I've been out of New York for the last 13 years and so not used to the hubbub of 'The City'--An experience.

    Are you considering self testing? It really is so much easier than going to the doctor often to test--


  • I haven't looked into it yet. My internist is on maternity leave and the md she referred me to is not very available. She'll be back fr maternity leave ?Sept so I'll discuss it with her then.

    I'm sorry for your fractures. That is horrible. I live a 20-25 min train ride fr Lincoln Center & I always say I should live between Lincoln Center and the theater district because I love both but I'm close enough. The apts near there are way too expensive for my retiree budget. I hope they find something to help you so that your mobility is not so limited. The City is crazy hectic. Have a good day.

  • Dr andrea gaito basking ridge nj. I travel 2hrs every 90days to see her. The best diagnosed me 5 yrs ago. I was ill for yrs until i. Met w her. Prevented me from probably suffering a stroke!

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