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| David Deas
- Fri Nov 06, 2009 11:07 pm
I'm not sure if this is the best place to post this because I'm not sure the nature of my illness, but I figure this forum is probably as good as any. Especially since I'm trying to rule out the worst.
I'll start from the beginning. In North Carolina.
About 4 weeks ago after eating some Texas Pete covered raw oysters along with a Fat Tire beer, I wound up with a tight, uncomfortable and unfamiliar knot deep inside my chest centered over my heart region shortly after this dinner. After it did not subside, at about 2:00AM early that morning I decided to visit the ER thinking it was probably not a big deal but I'd much rather be safe than sorry. That was the advice I was given anyways. I do not visit medics or hospitals very often, and in fact did not even have my health insurance sorted out at the time (never needed it), nor did I have a regular doctor. I guess I figured I'm entitled to a visit at least every once and a blue moon.
The ER ended up running an EKG, doing some blood work and taking some chest X-rays. All of those came back negative. What then was wrong? The doctors said that they didn't have a clue but it wasn't my heart, and promptly scooted me out of the hospital with the advice to return if symptoms evolve.
So after being discharged at about 5:00AM that morning and going to class for that day, I noticed that my left arm had become slightly heavy and easily fatigued. It was a bit of a labor to turn the steering wheel using my left arm/hand. On that note, I returned to the emergency room with my new symptoms. They again ran the same set of tests with the same negative results. I began to figure that it might have something to do with carrying my heavy backpack on my left shoulder for the first time ever in life (my right shoulder strap broke), but they disagreed.
By this time I'd began to show other symptoms, primarily of fatigue and a shortness of breath. I also seemed to be doing a lot of heavy sweating in class, making it hard to take notes and concentrate. I figured I would go back to my apartment and sleep it all off. After eating and hopping in the bed, however, I was immediately jolted up by a sensation of muscle cramping and the inability to catch my breath. By this time, I was really afraid I might actually be having some sort of a heart condition. I immediately checked my chest for a heartbeat, but I couldn't feel anything. Probably because of my slow heartbeat (45 BPM). Thinking of perhaps the worst, I rose to my feet promptly to check again, but it seemed the cramping in my legs and muscles would not let me move very quickly. It was as if my legs and arms were going to sleep in response to me trying to use them.
After the cramping symptoms subsided, I was able to make it back to the ER. This time I was certain they would find something. Again, however, they found nothing and gave me some medicine for acid reflux and educated me about panic attacks. Acid reflux can feel like heart pain I was told, but when I asked about my left arm symptoms the doctor told me he didn't know how to explain that. Afterward, I was then discharged upon taking a Prevacid and told to return if my symptoms change.
Shortly after this time my symptoms were nearing their height of intensity. I had developed a fluttering heartbeat, jaw pain, dizziness that made it impossible to focus, heavy fatigue throughout the body, the inability to catch my breath even at rest, and headache. I could do little more than slump in a chair. It felt as if I were dying, and I felt the hospital was probably making a mistake. The headache I could explain through my loss of appetite, but the other symptoms were all very foreign to me. I was afraid to leave the hospital lobby, and was in no shape to drive home anyways. I spent the night in the lobby.
After deciding that hospital was not going to help me and gathering up enough strength, I returned back home to Atlanta to be watched by my family and treated under their watch. Symptoms continued to worsen. The left side of my face had now went numb. I went to my father's doctor and after hearing my symptoms, he did the same thing the hospital did; look at the total absence of any risk factors, conclude it probably isn't my heart and then send me out the door without a clue or a direction to point in. Then I went to see my mother's doctor and he told me it was probably the flu because of flu season, acid reflux since my mom has acid reflux, and anxiety since its not my heart. He then gave me medicine for all three.
In the mean time I scheduled an appointment with a cardiologist and was offered a nuclear stress test by my local hospital on one of my subsequent visits. I took the stress test, but would be unaware of the results until much later. After seeing my scheduled cardiologist, who was affiliated with a different hospital, he reviewed my stress test results and said it came back technically abnormal. His remarks were that the stress test itself was invalid, and to prove it to me he promptly ran an ultrasound on my heart showing me that the regions the stress test results claimed were scar tissue were in fact still functioning just fine. I then scheduled a cardiac MRI in order to evaluate my heart function at the next level.
The acid reflux regime I was on, centered around two 40mg doses of Protonix per day, seemed to be helping. Constant abdominal bloating had become an issue over the course of my troubles, so PPI's kept things reasonable. The flu medication did not seem to be helping, and I choose not to immediately take the Lexipro. By this time by left arm weakness had graduated into a terrible pain in my bicep that was so intense it kept me from sleeping at night. Sometimes I would have to let out a yell when I moved my left arm too quickly. After noticing a rash on my arm where the doctors had drawn blood from repeatedly, I choose to take some Benadryl to at least relieve some of the itching. By the middle of that night, I noticed that my pain had disappeared from the chest and arm area. This had revealed clearly the underlying heaviness in the left chest and left arm region.
After having increased trouble breathing one weekend in addition to all of my other symptoms, I went to the emergency room again. They gave me a CT scan of my brain in addition the normal battery of tests they do to evaluate heart function. All were negative. They again sent me home with information about Panic attacks.
After being sent home and seemingly doing a little better, I decided to take the Lexipro and head to bed. I waited before taking the Lexipro because I did not know how my body would react to that type of drug and I wanted to have a decent amount of strength built up in case I did have a bad reaction. I didn't think it wise to be experimenting with drugs while in such a weakened state. After taking the Lexipro it seemed I would have a decent night sleep. I woke up in the middle of the night even more dizzy than I'd felt before. I decided that it was nothing and laid back down. Later on I rose up again to turn over and I was still just as dizzy. I then sat up on the bed, noticing that it took a great amount of energy and breath. I then tried to make it thirty feet to the bathroom and by the time I did I was out of breath as if I'd just run a marathon.
By the time I made it to the hospital I had to be wheeled in, I was totally stiff in the neck, shivering uncontrollably and I could not speak. I was then admitted to the hospital. The Lexipro, I believe, induced a bad reaction. After staying there for about 4 days, I was discharged in order to make my appointment for the cardiac MRI. The MRI came back negative, but while I was in the hospital I noticed that my chest pain responded to nitroglycerin tablets. I dismissed that, however, as simply the smooth muscle in the esophagus relaxing because thats better than thinking about the alternative explanation.
I also visited a chiropractor who investigated my spine and took some X-rays. He said everything looked normal, but that I should check for either lyme disease or mercury poisoning. The neurologist I visited thought everything was just stress, but indicated that he could not explain my armpit pain (presumaly swollen lymph nodes) or my stomach troubles. He did not do any real testing beyond banging my knee, feeling around with his hands and visually inspecting areas.
In the meantime my symptoms had continued to evolve and somewhat improve. Shortly after my cardiac MRI, the heaviness in my chest had traveled to my upper right chest and right arm as well, fatiguing them also. I had weird pulsing, slightly painful sensations on my inner thighs. My dizziness was still present (albeit somewhat reduced), and my overall quickness both physically and mentally still seemed slow. Physically, my arms only move so quickly and my hands cannot open and close very rapidly. My hands are very slow, quick to get tired upon use and this slow hand speed state seems to be least pronounced when my elbows are resting on something (early in the morning after I wake up my hand speed seems to be 100% or near). Sometimes I get cramping and numbness traveling down specific fingers (never my index). My jaw is always in a slight amount of pain and seemingly restricted to movement. My armpits began to hurt very badly spontaneously out of the blue, to the point where it hurt to rest my arms by my sides. At times, would feel as if I'm drowning in fluid and my head was in a pressure grip, especially when I lay down and especially if I forget to take my reflux medicine. Overall, though, I was improving.
One day after seemingly feeling half way decent, I decided to go for a brisk walk. When I tried, my symptoms returned. The very first thing that happened is my jaw began to hurt and become stiff. Then the dizziness returned. Then the shortness of breath. Very faint left upper chest pain. In no time flat I had to take a seat, and then I had to go home. After laying down my symptoms slowly subsided, and by the next morning I was ready for my GI doctor to give me an abdominal CT scan and an endoscopy. The abdominal scan came back totally negative, and apparently so did the endoscopy (with the exception of apparently having little higher acid) as best I could glean from conversation. He will let me know the full report next week.
While I left some stuff out for brevity and probably some symptoms because I've forgotten, but this is all basically where I'm at today.
One of my concerns moving forward is that my cardiology workup was incomplete. A volumetric CT scan, which is offered here in Atlanta, would be able to visualize any partial blockages in my arteries much better than a thallium stress test would. My understanding is that a volumetric CT is above 90% certain while a stress test doesn't even approach that level. Its also my understanding that cardiac MRI's only evaluate heart function and is less effective at resolving flow through tiny arteries.
I say that is a concern because of the people you read about who ace their stress tests and their ultrasounds and their EKG's and still wind up having a heart attack because they had undiagnosed angina. I don't want to join their ranks.
Another concern is some sort of vascular blockage. During the height of my left arm dysfunction it had a weaker pulse around the wrists than my right arm. But when I took the blood pressure around the biceps of both arms, it was similar. In any case, I was worried that I might actually have some sort of a weird circulatory inhibition elsewhere besides my heart that might be causing these symptoms.
If those are not the key lyme disease or some sort of degenerative muscular or nerve disease is my worry. The diagnosis of stress concerns me because of the way it is diagnosed, and because of the high price of being wrong. "Stress" is usually the catch all diagnosis that is thrown out there when the symptoms seem not to fit a pattern for a single disease or when the doctor simply doesn't know what the heck is going on.
So here I am. Still suffering. Out of school. Life on pause. Looking desperately for help and not seeing any light at the end of the tunnel.
Anything would be appreciated. Thanks.
| John Kenyon, CNA
- Tue Nov 24, 2009 10:23 pm
Hello -- This is the sort of story that drives clinicians crazy -- as you've probably noticed. The problem is you don't sound like an especially anxious person, although your voluminous (and very useful) notes here suggest you may have done just enough research to warrant some anxiety over the symtpoms, which consequently blurs the line between anxiety symptoms and somatic ones. So. Here we go:
Your initial complaint certainly sounded most like GERD, especially because of what you'd eaten. You were wise to have it checked, and given the circumstances, findings and recent food intake, plus your relative youth, it seemed reasonable to send you on home. However, after that the symptoms start to sound more classically cardiac in nature. This could be because they were or because you'd acquired just enough knowlege to cause you some worry, since learning the basics about given organ system diseases isn't but half the program, the other half being the knowlege of how to place them into the proper context given age, risk factors, history, etc. This is why medical school takes so long to complete. On the other hand, a well-informed patient is more likely to survive a life-threatening problem than one who simple accepts any response given. It's a fine line we tread with these things.
To keep this somewhat shorter than your post, you've had symptoms that could be attributable to heart disease, although your age and otherwise good health do argue against this. You've also had some neurological symptoms, and not the sort that would be attributable to anxiety. GERD seems a likely comorbidity for you regardless of whatever else is going on, which only clouds the issue, as you yourself have pointed out, since esophageal spasm will, indeed, respond to nitro, something the average patient wouldn't know. In this respect you either have learned too much for your own good or should go into (I'm quite serious now) the allied health field or nursing. You are on the brink of being pretty well educated about some of the more arcane aspects of diagnostic medicine. This is not normal, and I don't mean that in a bad way. It can pose problems, however, and those could be resolved in the academic setting. You could learn the rest of this stuff and become an excellent technician, nurse or even PA or doctor. You have an interest.
Meanwhile, just what is going on here? At a distance it is difficult to say, but it would seem there are comorbidities competing for attention and confusing the issue. You probably do have GERD. You may at this point also have some anxiety that wasn't previously present -- or you may have just enough OCD to have revealed some latent anxiety, OCD being an anxiety-based disorder and much more common than generally assumed. You also could be correct in your suspicion about occult heart disease. Your youth and health (and presumptive negative family history) all argue against this, but you're also aware of small vessel disease, which, again, the "normal" patient would never be aware.
I believe you should have a one-time comprehensive cardiac workup including nuclear stress test. While not the gold standard (that would be an angiogram) it is highly sensitive, as opposed to stress test without scan (far less sensitive and specific) and is certainly more sensitive for CAD than echocardiogram, which will only reveal structural abnormalities, old scarring and abnormal chamber sizes. You don't have any of those, clearly. If you have small vessel disease it is a diagnosis of attrition, since it rarely can be detected by even angiography with any reliable certainty. By the same token it also rarely is life-threatening, but can show up as sluggish LV movement on echo, which you didn't have. Thallium scan can't show up scarring but only possible (suspect) ischemia. If you had a positive nuc scan and the echo was normal you're still a candidate for angiography, given your symptoms. You're also a candidate for a neuro consult, however, as some of the symptoms are distincly neurological.
If I were you I'd want to draw a line of determination of cause, rule out the worst, then relax once that's been accomplished (if in fact the worst is ruled out) as the rest of the possibilities aren't life-threatening, but would only be annoying. If I were your cardiologist I'd want to avoid the angiogram, since if there is any CAD it is likely small vessel disease unlikely to show up at any rate, but -- because of the positive nuc scan and symptoms some of which are fairly classic, I would spring for the angiogram anyway. This means there is enough doubt either way that you'll need to find a doctor who'll do what you'd like him to do, or at least persuade your cardiologist to do something he suspects isn't warranted, to mollify the patient (and possibly a one-in-a-million rarity, heart disease in an otherwise healthy young man).
This becomes a question of who can outlast the other. I'd go for the gold standard in this case because it could eliminate a lot of doctor and ER visits over the coming years with the remote possibility of uncovering the unlikley Big Problem.
Hope this helps you make a decision as to how to pursue this. Please follow up with us here as needed and keep us updated as to how this all unfolds. And do consider a career change (unless you're already in the medical field) as you do seem to have an aptitude for this sort of work. But first get this thing sorted out. And keep in touch with us here. Good luck to you.
- Thu Jan 21, 2010 1:35 pm
Just curious. Did you ever find anything out regarding your case? I am in the almost exact same boat as you. I have had cardiolite and thallium stress test, tilt table test, echo, blood work, ekgs, xrays, chest CT scan, abdomen ct scan, 64 slice ct scan of heart, right heart cath. my symptoms are getting worse. My cardiologist doesn't think it is a spasm and I also asked about Microvascular disease but they all think I am nuts. They just give me anxiety meds and say we don't know. I am 34 y.o. female, 5'4", 110lbs. They tell me you need to work out. My cholesterol is fine, my blood pressure is low (they tell me to eat salt) My symptoms are chest pain that radiates, sometimes back back, sometimes palpitations, sometimes shortness of breath. I get horrible jaw pain and left arm pain. They are sending me to a neurologist and to Cleveland Clinic. I am miserable, and worse. I think I have looked up everything under the sun and still think it is cardiac related whether it be prinzmetal angina, microvascular disease. I know they gave me medicine in the cath to trigger a spasm and said nothing happened. BTW...all of my tests were fine. I am so frustrated I could scream. It is affecting my marriage because my husband thinks I'm nuts since the tests are all coming back normal. I am a pretty stressed out person and it doesn't help worrying about it. I am not too active, I have a desk job. I also drive over an hour to work everyday. When I get home I usually play with my 2 year old cars or something. Most of these symptoms happen when I am sitting down. Just curious as to what has came out of your symptoms, testing? Thanks :)