Im in the San Antonio area of Texas, USA. 47 year old Caucasian female.
I was very recently diagnosed with secondary anti phospholipid syndrome . ( 12 week laboratoriacal protocol between checks ) . My Rheum thought it a good idea to run the panel for the antibodies due to a rapid onset of neurological manifestation matching the symptoms.
My neurologist agreed and thought my complex partial seizures really fit. I also have auto immune optic neuropathy.
Within 8 weeks I developed DVT's and thankfully was hospitalized and stabilized before they embolized. It took 8 days to get INR to 2.
If any one is in the San Antonio area, I would appreciate info on your assembled team.
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KellyInTexas
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HI and welcome, very useful that you give a location as we have many from the USA on here I also enclose this which has some contacts: apsaction.com/research. but probably your best bet is other members on here. It does sound like you have a good investigative neurologist, if he is doing tests on you do make sure he does Vitamin D, B12 and iron plus thyroid also, as well as the standard tests for Hughes Syndrome/APS MaryF
Yes. The standard anti phospholipid syndrome antibodies were positively inebtifies by my Rheum with the proper 12 week wait between protocol- and all the other associated Rheum panels run. I will inquire about the vitamins, iron, and thyroid. I believe my neurologist and gynecologist are double checking those labs.
I'm sorry to hear your story but I am pleased they have found it and I hope you get the correct treatment. I had severe neurological symptoms and I'm on warfarin with a high INR of 3.5-4 which helps.
Yes, thank you- I dropped last week down to 1.2 and symptoms started up again. My INR is checked weekly because it's all so new. I just have only been out of hospital 3.5 weeks. Admitted with an INR of 1.4
My Coumadin is adjusted between 7.5, 8, and 10 throughout the week and yet it's not yet maintains INR at the 2.5-3 range the Hemotologist would like to see. I return to migraines and paralytic ileus due to mesenteric vascular congestion ( they now know- before the Bowel shut downs and subsequent abdominalsurgeries were a mystery) if the INR drops much below 2.
When you see Dr Erkan ask him about self testing your INR, if it works for you it will make your life easier. Read Professor Graham's response to me on question of the month for November before you go to your appt! It should help in case you need to be persuasive.
I will read prof G's response to you- thanks for suggestion. I'm still learning to navigate this site!
My internist just ok'd an INR self check machine for me. It should arrive Monday. My hemotologist was opposed- the purist approach he must abide by was very ( understandably ) nervous. I auuured him I would not adjust Coumadin dose- it was only to keep me from going to ER on a weekend or holiday if I was symptomatic in any way. I at least need a general idea of my number.
I saw a new rheum in San Antonio yesterday. My assembled team in SA ( San Antonio) wanted a new rheum they worked with, -although my original on was fine. He simply had never directly worked with an APS patient;alas I was his first. He was in favor of a more seasoned rheum for me.
The new SA rheum I saw in SA yesterday had experience with APS patients, but his experience with them is that they responded as expected with warfarin and did well. He is anxious and supportive of my upcoming appointment with dr Erkin at HSS in NYC next week and very much looking to learning from and working with Dr Erkin as my continuum of care physician here in San Antonio.
I see my hemotologist today in SA. He does not yet know my internist had to bump me to 13 mg of warfarin on sundays. This just happened and my internist knew I had appointment today- so all is good. Hemotologist is also asking to APS specialty help- so he will be glad to know I've secured dr Erkin. The veins throughout body are very painful. Tender, and surface ones "pop up to surface intermittently " -and swell. This happened with DVT's in my right arm. Just not sure. The proteins damaging the men brains and the complex reactions that ensue can be very irritating for the veins. I have a very good scholarly diagram of the process I can send a pic of of this process. If I can figure out how everyone is attaching pics! I may just need to be on laptop and not iPhone.
I saw dr Everett Allen yesterday in SA.he is the top in SA and has actual patients with APS.
S. Beeram is my Hematologist. I'm his first with APS.
S. jaafar is my internal medicine ( primary)- it's a big group. Several clinics but Methodist hospitalists.
Also I think I'm his first with APS
Bassem mazloum is my gastro in SA. He works with Jaime Mayoral- colon rectal surgeon. ( intestines in general. Paralytic ileus for me. Several surgeries.)
Anand Mehendale in Kerrville for neurology
I have the gold star team of SA but I'm having refractory APS.
They are all very receptive and looking forward to working and learning from dr Erkin in NYC- I see him one week from today.
We live directly on lake Ingram .
Between Ingram and Hunt.
But we need this foundation! No one here knows anything! I can't be of support to anyone except share my assembled team. I know they are supposed the top tier. They are willing to learn. I know who is not willing to learn .
I know dr Robin Brey and Dr Rebecca Romero at the MARC ( UT Health science Center ) research, teach and see patients. Their fields are immunology and neurology. Romero specializes in MS and Brey perhaps also, but Brey co published with regards to microclots /APS. The two women work together. One of my Rheums, Dr Jose Roldan You can email me...) co published with Brey and set me up with Romero. I see her the week after I get back from NY.
Can't help you with photo. I don't know myself. Let me know what you think of the question of the month response. It's posted on the upper rt hand corner... tap on it and it will appear. It's encouraging that you have a team ready to learn, as you will find most US physicians aren't versed in APS! Hopefully more will follow. I take 12.5 mg of warfarin every day and eat very little veggies. My INR stays between 2.4-3.
Make sure you have a venous stick as well as the fingerstick a couple of times so you can compare that the fingerstick being accurate. Good luck. I'm so excited for you!🙏🏻😀wittycjt@aol.com
Yes! Took me forever to find it! "Are they any closer to finding a cure"
I'm so glad he talked about the INR needing to be at least 3. Many of my docs here think if I'm at 2 I'm ok and I had DVT's, tia's I'm loosing my vision due to auto immune optic neuropathy and I have seizures. I'm at great risk of a full stroke because of TIA's. I'm 47...It's hard to comprehend. You certainly understand. So yes, you are right. Our doctors need to hear it from his mouth directly. Unbelievable the lack of knowledge our professionals are dealing with. Some are as appalled as I am. Some are arrogantly comfortable with their lack of knowledge as they send me on my way with an INR of 2.1 with a reassuring smile. Thanks for sharing with me!
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