1. < Autoimmune Diseases

Antiphospholipid: Weird symptoms, don't understand what’s going on

Posted by KeepingHeadUp @elizabeth513, Aug 21, 2021

I am 21 years old, Female with Antiphospholipid Antibody Syndrome that has thankfully not caused any clots and I am currently taking 81mg of aspirin daily. Since July 15th I have been into the ER 3x, all for a fast heart rate that got all the way up to 180 for no apparent reason. Was diagnosed with early pneumonia at my first visit and given antibiotics and sent home. The second time I went again was for fast heart rate that just came on suddenly once again. They did EKG and a chest X-RAY which came back normal. I was prescribed a holter monitor which I am still currently wearing to see what could be going on with my heart as it is always in the 90-100s just wheel sitting or barely doing anything. This last time I went into the ER I already knew they probably wouldn’t do much for me but wanted to make sure everything was okay, they did a d-dimer and some other blood work along with another EKG which were all normal according to them. Some symptoms I have been having are being unable to take a satisfying deep breath, only by chance or if I’m laying down can I can one in, constant sweating of my palms and feet and heart palpitations that come on as soon as I wake up in the morning, loss of appetite which has caused me to lose 12 lbs within this past month, sometimes I get sudden tingling in my hands and legs that stays ongoing for 20-45 mins. Weird stills that break part easy upon flushing them, and I did notice a little bit of blood when I wiped. I also have had swollen lymph nodes in my neck that have been there for over 2 years now some of them have changed in size but I’m not entirely sure. I do have an MRI scheduled on the 30th but am supposed to be starting college again on Monday and if my health continues to be this way I don’t believe I will be able to continue on with it...I guess I just wanted to know if anyone has any ideas of what this could be? My mother does have SLE- Lupus but doesn’t have the APS factor.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 23, 2021
In reply to @elizabeth513 "I have had my thyroid checked. I have attached a screenshot of the test result as..." + (show)
@elizabeth513

I have had my thyroid checked. I have attached a screenshot of the test result as it was borderline below normal.

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Since TSH was low did they test for T3,T4?

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oldkarl | @oldkarl | Aug 24, 2021
In reply to @jwillits8 "I had fast heart rate came on in April. In and out of hospital. High blood..." + (show)
@jwillits8

I had fast heart rate came on in April. In and out of hospital. High blood pressure. Holster monitor. Keep telling me nothing wron, however, I have gone from very healthy, active to couch potato. Swollen lymph nodes and episodes of hot face flushing and almost passing out, then my bowels empty out. I’m weak and not able to do much of anything. No answers from medical Doctors and have had every test there is. I’d like to know if you get any answers.

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@jwillits8 Looks to me like a good case for some autoimmune sleuthing. There are many good places to start, including http://www.omim.org, and http://www.hpo.jax.org, etc. Even better, and probably easier, are places like http://www.sequencing.com, http://www.ambry.com, Dante Labs.com. But first, make a list of all your symptoms and signs which you can use to sort through the info you will get. I have all the symptoms you mention, including wearing the Holter monitor and other medical equipment. I have ended up with a group of AI hits, including Myeloma>Amyloidosis>Gelsolin, Muscular Dystrophy (FKRP and FKTN with Walker Warburg), Cardiomyopathy, Encephalopathy, and a variety of cancers (Basal, melanoma, and others). Anyway, I believe you should think more in terms of "multiple" things gone wrong. OMIM.org and HPO.JAX. (human Phenotype Ontology) specialize in these cases. They are terrific help. oldkarl

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1 reply
jwillits8 | @jwillits8 | Aug 24, 2021
In reply to @oldkarl "@jwillits8 Looks to me like a good case for some autoimmune sleuthing. There are many good..." + (show)
@oldkarl

@jwillits8 Looks to me like a good case for some autoimmune sleuthing. There are many good places to start, including http://www.omim.org, and http://www.hpo.jax.org, etc. Even better, and probably easier, are places like http://www.sequencing.com, http://www.ambry.com, Dante Labs.com. But first, make a list of all your symptoms and signs which you can use to sort through the info you will get. I have all the symptoms you mention, including wearing the Holter monitor and other medical equipment. I have ended up with a group of AI hits, including Myeloma>Amyloidosis>Gelsolin, Muscular Dystrophy (FKRP and FKTN with Walker Warburg), Cardiomyopathy, Encephalopathy, and a variety of cancers (Basal, melanoma, and others). Anyway, I believe you should think more in terms of "multiple" things gone wrong. OMIM.org and HPO.JAX. (human Phenotype Ontology) specialize in these cases. They are terrific help. oldkarl

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@oldkarl Thanks for the info!
I am trying to get into endocrinologist for autoimmune, but takes forever.

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1 reply
oldkarl | @oldkarl | Aug 24, 2021
In reply to @jwillits8 "@oldkarl Thanks for the info! I am trying to get into endocrinologist for autoimmune, but takes..." + (show)
@jwillits8

@oldkarl Thanks for the info!
I am trying to get into endocrinologist for autoimmune, but takes forever.

Jump to this post

@jwillits8 Yes, it can take forever, but you can still do a lot of the work yourself. You, with a signature from your GP or another, can at least order a whole genome sequencing from Sequencing.com or Dante or other AI mill. It takes a couple months or so to get the results. There are some results which are likely not worth trusting entirely, such as the 1% genomes. But that choice is yours. Some of these are free, such as at Ambry.

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2 replies
oldkarl | @oldkarl | Aug 24, 2021
In reply to @oldkarl "@jwillits8 Yes, it can take forever, but you can still do a lot of the work..." + (show)
@oldkarl

@jwillits8 Yes, it can take forever, but you can still do a lot of the work yourself. You, with a signature from your GP or another, can at least order a whole genome sequencing from Sequencing.com or Dante or other AI mill. It takes a couple months or so to get the results. There are some results which are likely not worth trusting entirely, such as the 1% genomes. But that choice is yours. Some of these are free, such as at Ambry.

Jump to this post

@jwillits8 Another little note. Please, do not be afraid to just ask questions, and let the sources try to attract your participation by giving you the answers. One of my favorite sources is the hospital at the University of Helsinki. Another is ALNYLAM.Com Anyone serious about their AI stuff should make a solid list and catalog of sources from around the world, especially those from your ancestral homelands. One of min is Finland, one of the homes of Gelsolin, as is Japan, Portugal, and the travelers known as the Ashkenazi Jews. And learn about NCBI, NIH, Johns-Hopkins. oldkarl

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1 reply
jwillits8 | @jwillits8 | Aug 24, 2021
In reply to @oldkarl "@jwillits8 Yes, it can take forever, but you can still do a lot of the work..." + (show)
@oldkarl

@jwillits8 Yes, it can take forever, but you can still do a lot of the work yourself. You, with a signature from your GP or another, can at least order a whole genome sequencing from Sequencing.com or Dante or other AI mill. It takes a couple months or so to get the results. There are some results which are likely not worth trusting entirely, such as the 1% genomes. But that choice is yours. Some of these are free, such as at Ambry.

Jump to this post

@oldkarl
I just ordered from sequencing.
Will keep searching. Thanks, Joann

REPLY
jwillits8 | @jwillits8 | Aug 24, 2021
In reply to @oldkarl "@jwillits8 Another little note. Please, do not be afraid to just ask questions, and let the..." + (show)
@oldkarl

@jwillits8 Another little note. Please, do not be afraid to just ask questions, and let the sources try to attract your participation by giving you the answers. One of my favorite sources is the hospital at the University of Helsinki. Another is ALNYLAM.Com Anyone serious about their AI stuff should make a solid list and catalog of sources from around the world, especially those from your ancestral homelands. One of min is Finland, one of the homes of Gelsolin, as is Japan, Portugal, and the travelers known as the Ashkenazi Jews. And learn about NCBI, NIH, Johns-Hopkins. oldkarl

Jump to this post

@oldkarl
Thanks. I will keep looking. My ancestry is German and Dutch, so I will search there. Some of my family carries the Van Leiden / thrombosis 3 from Dutch side
( Netherlands). Joann

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Raddy 01@ | @nicholas94 | Sep 15, 2022

Hello I have been diagnosed with APS 3 years now .Didn’t understand what this was but I started researching .I’m seeing a Hematologist and a Rheumatologist.Have been on Coumadin for 2 years 90 mg weekly but since it’s being discontinued.Warfarin was my only choice for APS in denial because I’m a health freak .Hematologist told me don’t let the warfarin control you lifestyle unfortunately it did .I have a blood clotting and get very upset because I do an INR test weekly My issue started with headaches that was severe .After 2 MRI it shows I has 7 TIA in my right side of my brain I suggest you see a Hematologist if you can and lots of good luck in college

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 23, 2022
In reply to @nicholas94 "Hello I have been diagnosed with APS 3 years now .Didn’t understand what this was but..." + (show)
@nicholas94

Hello I have been diagnosed with APS 3 years now .Didn’t understand what this was but I started researching .I’m seeing a Hematologist and a Rheumatologist.Have been on Coumadin for 2 years 90 mg weekly but since it’s being discontinued.Warfarin was my only choice for APS in denial because I’m a health freak .Hematologist told me don’t let the warfarin control you lifestyle unfortunately it did .I have a blood clotting and get very upset because I do an INR test weekly My issue started with headaches that was severe .After 2 MRI it shows I has 7 TIA in my right side of my brain I suggest you see a Hematologist if you can and lots of good luck in college

Jump to this post

@nicholas94 Have you been on Coumadin for the APS or something else, and why is it being discontinued? Has the hematologist suggested anything to replace it?
Other than the Coumadin which is being discontinued, what are you doing to manage your APS?

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leb717 | @leb717 | Mar 29, 2023

Hi, everyone.

I just recently requested an appointment with Mayo Clinic and am waiting to hear if they will “offer” an appointment. I was diagnosed with antiphospholipid antibody syndrome in 2018 after a pulmonary embolism. I have been experiencing a variety of neurological symptoms over the last 10+ years, including constantly feeling imbalanced, dizziness, occasional vertigo, and chronic mixed headaches and migraines. I’ve been seeing specialists in my area and feel confident in their care with the blood clotting aspects. I’m on Coumadin and Plaquenil. For migraines, I’m also prescribed Emgality and Nurtec. I’ve seen ENTs and had a full work up several times, and they did not find any inner ear issues. However, some specialists have noted to me that they think it’s quite likely all these neurological symptoms are related to APS, but nobody I’ve seen knows how to treat these. This is what I would like to get treatment at Mayo for. For whatever it’s worth, my husband works at Mayo Clinic and our health insurance is the Mayo employee plan. He works remotely so we’ve never been seen at Mayo before.

Part of me is steeling myself to be rejected for the appointment request. My experience has unfortunately been when many doctors encounter a very confusing medical issue, they pass you along as a patient. Hoping for good news that I’m offered an appointment.

Has anyone here with APS experienced any other neurological symptoms, like imbalance, vertigo, or migraines?

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