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Antiphospholipid syndrome concerns
Hello everyone
I am a 32 y/o female and I worked as a waitress for almost 15 years and I was studying nursing. I was having symptoms years before I was diagnosed because of my age I guess. Then I had really bad vericous veins so I had procedures done to correct them then I'd say within a year I was hospitalized with multiple pulmonary embolisms in both lungs which actually caused my right lung to suffer a severe infarction as well as numerous DVTs in my legs and a couple in my left arm.
From all of this my heart and lungs were affected, I have 2 heart valves that are regurgitating blood and COPD.
I am on numerous medications, hydroxychloroquine, Metoprolol, 2 different inhalers, duloxetine, and warfarin ofcourse.
But I am still having so many problems and it's been almost 2 years, I am constantly tired and extremely weak all of the time, my feet go numb if I stand or sit for more than 20 minutes (my toes literally turn blue to about half way up my feet), my blood pressure is low but normal from the heart meds but my heart rate is always high it's like 130 resting. I do exercises and walk with help because I've fallen 5 times now.
My body hurts constantly mainly my back and legs, they checked for lupus and RA, the RA was negative the lupus is negative but I did show positive the first time but because I was already on the blood thinners they cant get a full actual reading. It's also affecting my teeth now...
I honestly just feel like my body hates me for some reason or it thinks I'm 70 years old instead of 32.
I'm just curious if anyone else went through the the same or something similar and what they did, or if people are going through the same thing currently.
Sorry this post is long I tried summarizing it as much as I could.
Thank you for taking the time to hear me out.
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I haveAPS for years now, and I never experienced all of the symptoms you have. I had a wonderful rheumatologist in Florida who diagnosed my condition and have been on hydroxychloroquine since then. It was explained to me that most Lupus patients have the antibody too. It sounds like you may be a Lupus victim as well.
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2 ReactionsHi Meghan,
Hail to a Hero! You are dealing with so much in your struggle, and at such a young age. I am so sorry for the unending impacts all of this has on your life and on your own self.
I trust you have some excellent specialists on your team..? Our bodies are so inter-connected, we need high levels of expertise to sort it all out.... and then, some guidance on 'How do I now live? My rheumatologist is also an Internal medicine guy... so helpful in sorting out this "Inflammatory- Autoimmune Umbrella". ( I like the word, umbrella, as we are in a storm!)
Getting a thorough and complete assessment is key to getting you on track in the correct diagnosis(plural), and the right treatments.
I have found lots of encouragement in reading some profiles of our Connect members; we are not alone! and there are wise insights in "how to proceed".
Are you near a Mayo Clinic? (I always seem to ask that of American folks who have multiple system challenges).. guess if I had been living in the US, their expertise would have cut down on decades of 'wondering and struggle.'
I am sending you big hugs, and all the encouragement for you to get the right people on board to get you the best help there is available!
Answers and direction is 'Gold'.
Let us know how you are doing.
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2 Reactions@meghanl, you may also be interested in this related discussion:
- Anyone have experience with Antiphospholipid syndrome (APS)?: https://connect.mayoclinic.org/discussion/antiphospholipid-syndrome-hughes/
Have you been diagnosed with APS? Getting a diagnosis for autoimmune conditions can be a tiring and long road. I agree with @thisoldewe that you may wish to consider an appointment with Mayo Clinic for a thorough review.
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3 Reactions@meghanl I’m so sorry that you're having such a hard time. Sounds like you really need an expert. Are you currently at a comprehensive medical center? If you are at a community hospital, ask to be referred to a comprehensive medical center or a university hospital.
Mayo Clinic has a group of hospitals, that work with them, called the CareNetwork
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members. You might see if one is near you. Or, if you would like to go to the Mayo Clinic, use this link: https://mayocl.in/1mtmR63
When I first got sick with an autoimmune disease, my local hospital didn’t know what was going on, except that I had lesions on my brain. My husband immediately got me an appointment at the university hospital and the doctor recognized it right away.
I’m a nurse, too, and I recognize how difficult this all is. Please get help.
Do you live with someone who helps you?
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1 ReactionGosh what a journey for you!! I absolutely agree with Becky.. you would really benefit from an immunologist at a comprehensive medical center .. I hope you can work that out.
Reading your struggles makes me feel sheepish about my run of the mill RA. I have no wisdom to share , but I’m a good virtual listener if you just need to get out of your head. ❤️🩹
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3 Reactions