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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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 31, 2023
In reply to @leb717 "Hi, everyone. I just recently requested an appointment with Mayo Clinic and am waiting to hear..." + (show)
@leb717

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?

Jump to this post

@leb717, welcome. I moved your message about antiphospholipid antibody syndrome and experiencing neurological symptoms like balance issues, vertigo and migraines to this existing discussion:
- Antiphospholipid: Weird symptoms, don't understand what’s going on https://connect.mayoclinic.org/discussion/weird-symptoms-no-clear-understanding-of-whats-going-on/

I did this so that you can easily connect with fellow APS members like @elizabeth513 @nicholas94 @mskeith @lininmd @wig @paktoledo and others.

Have you seen a neurologist locally too?

REPLY
2 replies
wig | @wig | Apr 1, 2023
In reply to @colleenyoung "@leb717, welcome. I moved your message about antiphospholipid antibody syndrome and experiencing neurological symptoms like balance..." + (show)
@colleenyoung

@leb717, welcome. I moved your message about antiphospholipid antibody syndrome and experiencing neurological symptoms like balance issues, vertigo and migraines to this existing discussion:
- Antiphospholipid: Weird symptoms, don't understand what’s going on https://connect.mayoclinic.org/discussion/weird-symptoms-no-clear-understanding-of-whats-going-on/

I did this so that you can easily connect with fellow APS members like @elizabeth513 @nicholas94 @mskeith @lininmd @wig @paktoledo and others.

Have you seen a neurologist locally too?

Jump to this post

Yes, I see one regularly. They've done MRIs of my brain which shows increase in "white matter" but nothing that definitely indicates clots on the brain or brain damage.

REPLY
olivesn | @olivesn | Apr 1, 2023

Sounds like symptoms of hyperthyroidism. Have you been checked for it?

REPLY
paktoledo | @paktoledo | Apr 4, 2023
In reply to @colleenyoung "@leb717, welcome. I moved your message about antiphospholipid antibody syndrome and experiencing neurological symptoms like balance..." + (show)
@colleenyoung

@leb717, welcome. I moved your message about antiphospholipid antibody syndrome and experiencing neurological symptoms like balance issues, vertigo and migraines to this existing discussion:
- Antiphospholipid: Weird symptoms, don't understand what’s going on https://connect.mayoclinic.org/discussion/weird-symptoms-no-clear-understanding-of-whats-going-on/

I did this so that you can easily connect with fellow APS members like @elizabeth513 @nicholas94 @mskeith @lininmd @wig @paktoledo and others.

Have you seen a neurologist locally too?

Jump to this post

Thank you 😊
Pat

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