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Bewell

2y ago

Dealing with Chronic Illness and Multiple Diagnoses

While having Chronic Epstein Barr Virus active for one full year along with fatigue Brain fog and shortness of breath I have been diagnosed with very high blood pressure and sleep apnea with Hemangioma vascular tumors in my mid and lower spine all over with 4 bulging disc and a herniated disc and a cyst in lower back as well. My legs are red and swollen when I stand and I now have pulsating ringing in my ears and have become dizzy when standing and moving around a lot. I get flush all over and I itch for no reason which causes me to turn very red and bruised. I can now see my blood vessels in my legs and feet. If I sit my feet fall dead asleep! I have fallen several times due to the dizziness. For 9 years now I have been seeing double with a damaged optic nerve. My eye pressure is fine. I have been to so many doctors I am sick of doctors!! Now after being sent to the University of Alabama to see a nuerologist who is testing me for Mayastevia Gravis my regular MD saw my blood pressure after standing and sitting and my pulse and higher number changed. She thinks I may have POTS Syndrome Dyaumastomia which fits all of my symptoms exactly. She has ordered me to have the tilt table test done which I know I will not like! I have had one infection after another this past year due to the EBV phuemonia 5 times along with other infections. I can no longer work since January. I am having a hard time dealing with the fact that I can no longer do the things I used to could do at the moment! If anyone can relate to any of these symptoms or Illnesses please chime in??? I am open to hear! Also I may need knowledge about this new possible diagnoses but I too have a lot of knowledge with other medical issues to help others happily! Thank you!! My brain fog is so bad I forgot my nickname on here! Lol not funny but so frustrating.

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thrillsnchills

1y ago

I am having trouble figuring out which doctor to see for what . I have so many symptoms all at once that I am overwhelmed. I had epstien barr in August 2021 the fatigue never left the doctor testes me in may of 2022 said I have Cyclomeglovirus and epstien barr. There had got to be something they can do. I'm being told there is nothing to do but let it run its course. I read that they can do antivirals through it to help had anyone else heard of any treatments
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thrillsnchills

1y ago

I have had dizziness headaches blurred vision fatigue heart palpitations weakness muscle pain trouble swallowing since I got EBV off and on my immune system is not good always sick w something or another very confused and how to handle it. Or what I can do about it. Which doctors tests ect.
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Oouchthathurts

2y ago

I think we might be twins. You are not alone. I also have many of the same issues and been given so many diagnoses throughout the years. I’ll send you a message so we can chat.
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Rosabella

1y ago

same here. I have a lot of these same experiences
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Campbell

2y ago

I can so relate! After 10 years of pressing, I was finally diagnosed in May with POTS, Hashimoto’s, Primary Immunodeficiency with Epstein Barr, Fibromyalgia, and IBS. I had a recent colonoscopy which revealed Diverticulosis, which explains the pain I am having in my lower left abdomen. I actually had half of my thyroid removed in 2010 and they still refused to diagnose me with Hashimoto’s. A scar on my neck staring them right in the face. Anyway, finally on meds, but unable to work. COVID aside, I catch everything and am out of work for weeks at a time. Frustrating, so I totally get you!

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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