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Low T-Cell - Bone Marrow Biopsy

Blood Cancers & Disorders | Last Active: Nov 15, 2022 | Replies (162)

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@mariabrat

Hi @loribmt

I hope you’re having a nice weekend! I just wanted to give you some update. I went for dinner with my family and right after I started feeling a malaise and my heart was racing at 130. I went to the Emergency and felt absolutely horrible. I tested positive for D-Dimmer at 6500 which is very high so they were convinced I had a pulmonary embolism. I went to an emergency scan with contrast. They kept me in a room to observe me as my heart rate was too high. The scan came back negative which they were very surprised. They said they think I have POTS, and that they don’t know why D-Dimmer is high. After reading on the internet I found out that D-Dimmer can increase if important disease is present in the body and POTS can be cause by an infection, trauma etc. I am very confused with the D-Dimmer wasn’t high a week ago when I went to ER the first time. I am also confused why the symptoms of POTS would have started 2 weeks ago? Could it be the vaccine? Is it my autoimmune/disease? I am very discouraged, I feel like my heart will stop during night, and I walk two steps and my heart is on the roof. Im feeling very anxious because this create very strange feeling and dizziness. Im very struggling to go out of my house without panicking and thinking I’m going to die. I have a machine for a week that measure my heart beats, but that might take 3-4 weeks to get the results. I don’t know if you’ve ever heard about this but that’s very mysterious, Im again thinking they must have miss something or if my underlying disease will make my heart stop. I’ve been feeling like my heart can’t handle my sickness anymore as I feel absolutely exhausted.

If you have ever heard this, or if anyone had this condition, I am keen to hear some advice

Hugs from Canada xx

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Replies to "Hi @loribmt I hope you’re having a nice weekend! I just wanted to give you some..."

Maria!! Oh my gosh, sweetheart, I’m so sorry to hear about your horrid experiences with these episodes! But wow, huh? This is really revealing about your possibility of having POTS, Postural orthostatic tachycardia syndrome). You know your body better than anyone else and this is what you’ve been saying all along!

I know nothing of this condition but I found several discussions in our Connect forum which relates to POTS. Read this one! I’ve posted the link below so you can follow along with @azurite who wrote in Aug 20, 2020. This could have been you writing! It parallels your symptoms!

“ I'm 27 years old, and 2 months ago (coincident with just before I had an upper endoscopy), I started experiencing symptoms of lightheadedness, dizziness, heart racing and pounding out of my chest, blurry vision, etc. I had a til table test done earlier this month that was positive for probable POTS. However, coincident with these symptoms, I also began experiencing what I would call non-anxiety "panic attacks." At times when I wake up in the middle of the night, my heart will start racing and a sense of panic floods my body. My veins feel as if they go white cold with electric charge, and I feel 'trapped' inside my body, oftentimes shaking. My brain will also often feel like it's being pulled into another dimension. It's a horrific sensation that can take 20 min to pass (I typically have to take a Xanax to get through it). There were also days when as soon as I would wake up in the morning I would instantly be filled with a sensation of panic with a racing heart. My body feels like it's constantly on the edge of fight-or-flight, but it feels entirely physiological rather than psychological (I've been meeting with a psychologist for months and had been doing really well with my anxiety, I never experienced panic attacks before). Has anyone else with POTS experienced these issues? I'm getting better dealing with my issues of lightheadedness during the days, but now I'm terrified to go to sleep at night.”
Here’s the link to all of the conversations from their posting. None Stop Panic attacks with POTS
https://connect.mayoclinic.org/discussion/non-anxiety-panic-attacks-with-pots/

https://connect.mayoclinic.org/discussion/pots-patients-vaccine-or-no-vaccine/?pg=1#comment-624457

POTS
https://connect.mayoclinic.org/discussion/pots/

21 Things People Don't Realize You're Doing Because You Have POTS: https://themighty.com/topic/postural-orthostatic-tachycardia-syndrome/things-people-do-because-pots

I hope now that there’s been this huge discovery, that there is credibility to what you’ve been saying all along to your doctors. I also put a link in regarding the Covid vaccine and the possibly of POTS, just because you mentioned it.

Please let me know what you find out! I’m so relieved your with your parents right now! Sending a huge hug and a little sigh of relief that you might finally have a diagnosis!