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Not sure APS, lungs or heart?!?!
I'm new to this so here it goes... I have a major request that I would like some opinions on. I have been feeling lightheaded and heavy chested (feels like something is in my lungs, like a toxic gas or something) for the past 4-5 weeks, and now feel a sense of hot flashes around my neck area (usually after eating, but even lying in bed, now just randomly at times). Sometimes, it feels my blood pressure goes up, and at other times feels down. Even at night, I sometimes feel lightheaded, so I need to get up and drink water. It was on and off on some days, but recently has been getting worse, even on a daily basis (most recently hourly) . I already went to the ER once a couple weeks ago, then again this past Thursday (and almost 2 other times) where they took a CAT scan to check my brain and lungs. I have also been doing all sorts of blood work to check for internal bleeding, anemia, my iron count and even my thyroid. Still waiting on my hypothalamus test, which my friend suggested since I get those funny hot flashes around my neck.
By the way, I also had a PE (clot in my lungs) in November, where I had similar symptoms, but was taken care of with blood thinners. I also was recently diagnosed with APS Antiphospholipid syndrome (which causes clots), but when I went to the ER on June 27, they found none (via contrast CAT scan). My doctor and hematologist both said that I need to be on Xarelto for the rest of my life, but that it should not cause all of these symptoms.
So, the good thing is that everything is normal (at least from a medical perspective), but the bad thing is I don't know why I'm feeling this way, and it feels super terrible. I think I already had 8-9 blood work done within the past few weeks, and it makes me feel down. During the past weeks, I felt 50/50 on whether to go to the summer school each day, thinking whether I can make it through the short day. Last week, I went to see an ENT (everything was clear), and then a neurologist this week. My primary care giver has tried to help, but he (as well as I), are running out of options. Others have suggested a cardiologist which I will see on August 8. Recently as of Thursday, my chest has gotten sore while lying down. That's the reason why I went to the ER on Thursday, because I got up after only a couple hours with my heart racing and my body flushed. I am getting so desperate and distraught. Any thoughts, suggestions, or words of advice from anyone will help...Scott
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APS is associated with autoimmune disorders frequently although it may occur on its own. I would highly recommend you get tested for autoimmune disorders, particularly lupus, which can be done by your PCP (basic screening tests) or more in depth by a rheumatologist. AI disorders often cause rather vague symptoms that are hard to pin down. If you’re male, Drs are less likely to look for these as AI problems are much more common in females. I would ask your PCP to do some screening tests and/or refer you to a rheumatologist.
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3 ReactionsOkay, thank you so much for your response!
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1 Reaction@scottham777
I am a 55 year old female and had APS autoantibodies detected in 2 different blood tests 2017 and 2019 but never officially diagnosed with APS for some reason. I also have small fiber neuropathy and autoimmune Hashimoto’s thyroiditis plus alopecia areata. After getting the COVID vaccines in 2021, I had shortness of breath, difficulty breathing, and chest pain like I was having a heart attack at least 3 different times. This happened over 3-4 months after the 2nd vaccine and EKGs in 2022 showed an old infarct! Later I was diagnosed with sleep apnea since I was having a hard time breathing overnight. Have you ever been tested/diagnosed with sleep apnea since your APS diagnosis and pulmonary embolism? Also, has your doctor considered adjusting your APS medications? You may want to check your symptoms against the Xarelto side effects. Did your neurologist test your for small fiber neuropathy via a skin punch biopsy? This can affect your heart, lungs and blood vessels.
https://www.drugs.com/sfx/xarelto-side-effects.html
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2 ReactionsOkay, thank you for the information!!
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1 ReactionIt’s my understanding that the DOAC blood thinners aren’t gold standard of treatment for APS. Didn’t work for me but couldn’t get my hemotologist to prescribe warfarin so I just do baby aspirin am & pm. Of course everyone’s different and we have to trust our docs but I just don’t understand why everyone with APS isn’t regularly getting an INR check. Nothing to do but folllw orders and hope for the best. Primary APS is pretty rare though I think so I’d definitely be looking for an autoimmune or paraneoplastic cause if I were you.
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1 ReactionHey upon looking at your reply again, I think it hold a lot of validity. The main part that got me going was: "AI disorders often cause rather vague symptoms that are hard to pin down." So, say for example that I had APS in combination with lupus? Does that combination make things worse? Do you think that it could cause symptoms like lightheadedness, discomfort in my chest, and now shortness of breath? What would be the next steps for treatment? Thanks!!
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1 ReactionYes all 3 symptoms can be from an AI disease which should be checked for by a rheumatologist. Your PCP might do some screening tests but a thorough work up is needed by a rheumatologist to get an accurate diagnosis. Then treatment can be initiated. I hope you follow through on this especially since your EKG shows an old infarct. There’s a high percentage of Lupus patients with APS ( about 30%} 9/10 lupus patients are women. Good luck!
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3 ReactionsA Neuroimmunologist is important in addition to a rheumatologist, I think. That’s who got me my answers first bc I had atypical presentation and the rheum really only tested for a few of the most common autoimmune diseases when there are so many rare ones.
Thanks again, much appreciated!! By the way, the "EKG old infarct" was from someone else's post. If you were to guess, what kinds of treatment medicines/options would be given? I just want to have some relief!!
Thank you! Wow, I've never heard of a Neuroimmunologist! Can I ask what diagnosis (if any) did you finally discover? What types of treatment plans did you get (or are getting)?
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