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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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Thank you. I will definitely look into it.
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2 Reactions@amroberts Glad to hear about the schedule Dr.s you are going to see Let us know we care here .
Hello @amroberts,
I've read with interest your post about your ongoing health problems. I'm so glad that you and your medical team are persisting in looking for answers. It can really be frustrating to have symptoms like yours and not to understand the origin, isn't it?
While I understand that it has been several years since your diagnosis of ehrlichiosis (a tick-borne disease), I found some information about this on the CDC website. https://www.cdc.gov/ehrlichiosis/treatment/index.html. It would be good to always remind the new doctors you see about having had ehrlichiosis.
You also mentioned, "the results said pulmonary pressure was not calculated due to poor envelope strength." I'm not sure what that means, but here is some information about Echocardiograms from the American Heart Association, https://www.heart.org/en/health-topics/heart-attack/diagnosing-a-heart-attack/echocardiogram-echo.
The advice that has been posted about seeking another opinion from a teaching hospital/clinic, like Mayo or a university medical center, is a very good suggestion. Do you plan on following up with that?
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2 ReactionsOkay, thank you!
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1 ReactionThank you for the information. I have done some research, but I have not been on the websites you posted.
I have asked my primary dr about getting a referral to the Mayo Clinic or something like that. She thinks that I should talk to an infectious disease dr and get a second cardiologist opinion first. It’s just a little frustrating because it is taking so long to get in to see these other doctors. But I called the infectious disease dr and the cardiologist today to see if I could get my appointments moved up. I did get one moved up, and they are working on the other. So i will be asking my primary doctor about the Mayo Clinic or a teaching hospital after these specialist appointments in the next couple weeks.
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4 Reactions@amroberts Hi, Amber, let me add my welcome to Mayo Connect! You have had some good responses here to your concerns, and we all seem to agree that is is indeed confusing and concerning to have the symptoms you are showing. You were very thorough in describing your situation. Have you been journaling what you are going through, and showing that to your medical doctors? Many times that really helps them to understand when the different manifestations occur. Afterall, in an office setting, you cannot replicate that shaving legs in the shower, or going for a walk, etc! Writing down the time of day, symptom, severity, activity just before, perhaps even mealtime, will help.
A teaching hospital or Mayo Clinic may hold the key to figuring all this out. It's good your mother is noticing things also, and it sounds like you have her support.
I hope you will come back and let us know what you decide, and how we can help you?
Ginger
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2 ReactionsThank you.
I did an in depth journal when they did the halter monitoring. Besides that I just kind of have a running document on my phone where I add new symptoms and severities. But I think journaling in more detail is a good idea that I will try. Thank you for the idea.
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3 ReactionsHello Amber,
Wondering how you are feeling? Any answers to your health concerns yet?
Funcountess
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1 ReactionI am feeling the same. I do not have any answers yet. My primary dr is going to put me on some medicine for chronic fatigue in hopes that it will help. I will see a cardiologist and an infectious disease dr next week who will hopefully have some answers.
Thank you for your concern.