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Feeling awful for 7 months and doctors don’t know what’s wrong
Hello, my name is Amber. I am a 21 year old female. I do not smoke, have never done drugs, and only drink a very little bit very occasionally. ( Yes, I know you think I’m lying, but that’s just the truth). I am no athlete, but I live on a farm and I have been pretty active throughout my life. 7 months ago, my family and I took a road trip to Nebraska (about an 8 hour trip from where I live). During that trip my symptoms started all of a sudden.
Now, every morning when I wake up (or if I wake up from a nap) I can feel my heart beating through my arms and into my fingertips. I can also feel it beating up my neck. I can always feel my heart beating in my chest. That is the only way I know how to explain it. It’s like I can feel my heart squeezing and feel blood flowing through my body. Im guessing that’s palpitations.
As soon as I am conscious, before I even open my eyes, I am dizzy. Everything moves all the time. I will also get light headed occasionally, and feel like I am going to pass out.
My chest hurts all the time. The pain is on the inside of my left breast. It started out as more like pressure, then it turned into a dull pain, and now it is a sharp pain. Sometimes it will get worse for no apparent reason. The sharp pain has been staying longer and is sometimes accompanied by a pain in my left shoulder in my back and sometimes a pain in my jaw like under my tongue.
I have troubles breathing. Not like I’ve just ran a mile but like an elephant is on my chest and I cannot get a good breath.
I feel lethargic, tired, and completely worn out ALL the time. None of these symptoms ever let up or leave. They used to come and go but not any more. They are always there. Occasionally, I will get hot flashes. I have began having confusion or maybe problems concentrating most of the time. I feel like I can’t even function properly.
On the worse days, my whole body aches and it hurts to move. My mom also says that when I have a hot flash, accompanied by worsening of all my other symptoms, that I turn very noticeably pale.
Also, I have always had troubles with my feet getting cold but now I feel like they are colder and the coldness has started to come up my legs. Sometimes my toes will go numb from the coldness. The other day, I was shaving my legs in the shower, and I was bent over for probably a minute. I didn’t realize until I stood back up that my leg had gone numb from the ends of my toes all the way to my hip. My hands have also started to swell. When I fully extend my fingers. My nail beds turn white.
I have had an extensive work up. Blood tests, MRIs, CTs, X-rays, and echocardiograms. Nothing huge has came up or been connected to my symptoms. I just wanted to post on here and see if anyone had ran across something like this before and might know what’s going on.
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@amroberts Let me be the first to welcome you to connect . We cant diagnose as we arent professionals but care about everyone on here and try to help if we can as we all have a diverse amount of problems. What other kinds of Dr,s have you seen beside your PCP and Cardiologist ? From what you said you have a number of symptoms that could be any kind of problem . Im so sorry you are going through this as you are so young. Let us know about your specialist and anything else you can think of .
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2 ReactionsOkay, thank you.
I have also seen an ENT specialist (via zoom), I am scheduled to see infectious disease May 29, and I am scheduled to see another cardiologist June 26 for another opinion. (It has been difficult getting in to see other doctors and specialists during this Covid stuff.)
I had my gallbladder removed when I was 14, was later diagnosed with ehrlichiosis (a tick borne illness) when I was 16 after a 1 week hospital stay where my liver was struggling among other things (I was very sick), and I have a systolic heart murmur.
I have taken a round of antibiotics, steroids, and an anti-viral medication. My doctors have also tried medications to treat hypo or hyper thyroidism, panic attacks, depression, water pills, potassium pills, and some others just to see if anything would help my symptoms. But none of the medications helped.
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1 ReactionHello Amber,
Sorry about your symptoms. Have you gone to a teaching clinic/hospital?
From your symptoms, my guess is a good cardiologist is needed.
Do you have unstable blood pressure?
Did you wear a Holter monitor to record and monitor your heart? There is also a loop recorder to record heart rhythm malfunctions.
In an older person your symptoms could be a form of AFIB, at your age it’s highly unlikely.
Again, a good cardiologists and endocrinologist can hopefully get to the root of your problems.
Keep us posted. Hope you start to feel better.
Funcountess
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3 ReactionsThank you.
I have not been to a teaching hospital/clinic. I have not seen an endocrinologist nor do I have a referral for one, but I will ask my primary dr about seeing one. I have wore a holter monitor, and it just picked up a systolic heart murmur that I have. I do not have unstable blood pressure. My blood pressure is good, and I have a lower heart rate ( about 65-70 bpm). My first echo showed mild pulmonary hypertension, but the first cardiologist I saw said that it was not a problem and it couldn’t cause all my symptoms. Then in my next 2 echos, the results said pulmonary pressure was not calculated due to poor envelope strength. My primary dr said the cardiologist told her this meant that everything looked good (un-noteworthy) so pulmonary pressure didn’t need to be calculated. Hopefully the next cardiologist I see will be more helpful.
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1 ReactionYour levothyroxine friend here!
One pill every day. Would that other conditions would be that easy!
I am praying that the doctors that you see will answer all your needs.
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1 ReactionHave you seen an endocrinologist?
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2 ReactionsThank you. Me too,
I was on levothyroxine for a while, and my dr had me stop taking because my symptoms did not improve.
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1 ReactionI have not seen an endocrinologist. Someone else mentioned that also. I will ask my primary dr about seeing one and getting a referral.
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1 ReactionPraying that you find the doctor who will help you.
Stay the course, ask questions, take notes🙏
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2 ReactionsHi @amroberts, it is tiring, especially when you're not well, to continue to search for answers and see multiple doctors, tests, etc. I applaud you in your perseverance and am glad that your doctors are listening to you and working with you to find answers. Someone mentioned going to a major teaching hospital and I agree. You might consider getting a second opinion at Mayo Clinic if that is a possibility for you. At Mayo Clinic, teams of multiple specialists work together to determine the diagnosis. Here is the contact information should you be interested to find out more http://mayocl.in/1mtmR63
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3 Reactions