Discussions By Condition: I cannot get a diagnosis.

palpitations, lightheadedness, heavy-feeling limbs, no diagnosis for 2+ years!

Posted In: I cannot get a diagnosis. 55 Replies
  • Posted By: violachica286
  • June 28, 2007
  • 09:41 PM

Hi,
I'm a 20 y/o who's been looking for a diagnosis for a couple of years now. It all started back in fall '04 where I was diagnosed with CMV (similar to mono), had to be home schooled for a couple of months until I got better. Some fatigue lingered but it wasn't a huge deal, I went back to school, etc. About 2 months after going to college, in fall '05, I was in class one night and I started feeling really lightheaded, my limbs felt heavy, I got palpitations, and I felt really warm all of a sudden. They brought me in to the ER and my EKG was normal 'cept for the increased heart rate. They also ran some bloodwork and claimed that my electrolytes were slightly off, so they gave me an IV, monitored me for a while, and then let me go. My heart rate continued to be a bit high, so I saw a cardiologist in November '05, who sent me for an ultrasound and then put me on a low dose of a beta blocker to help control the palpitations.

When sitting for extended periods of time (an hour or more) my legs from the knee down would feel kind of strange. Not really numb, they didn't hurt, they just felt kind of heavy. I had been doing better for awhile but after having more bloodwork taken in March '06 over spring break, they found that my prolactin level was mildly elevated. Still struggling with feeling weak when standing (like I'll fall over, but I've never actually passed out and my vision is fine). They repeated the test a few months later and it was elevated a bit more. They sent me for a brain MRI which showed a possible small mass on my pituitary, but it was inconclusive. So then I was sent to an endocrinologist, who ran a lot more blood tests (testosterone, some other hormones, continued to check the prolactin, etc) some rare endocrine disorders were ruled out, but the microprolactinoma wasn't diagnosed/ruled out. I ended up in the ER again one afternoon for palpitations, sweaty palms, feeling weak, etc. EKG showed nothing, the triage people tried to call it a panic attack (though I didn't panic til well after I started feeling sick)

I had bloodwork repeated in November '06 and the prolactin level was back to normal. I then got a bad cold in February and had to be put on bed rest at school for a week because I was too dizzy, they took chest x-rays and that was normal. They put me on a heart monitor for 3 weeks and that didn't show anything.

So basically...
palpitations (the true occurrences are rare now ONLY because of the medication), I feel weak a lot of the time especially when standing up, legs below knees feel heavy sometimes, sometimes my chest will feel tight as though I'm anxious even if I feel calm...I'm about to go for more bloodwork tomorrow to recheck the prolactin level along w/ a CBC and testosterone again. Everything is more complicated now because my endo apparently left the practice and left no forwarding info, so I'm without an endo. We're debating going to an infectious disease specialist to find out if this is somehow related to my bout w/ CMV...

does anyone have any insight into this? It's been so frustrating because I've had to give up so much of what I used to do because I feel too weak to do it, and getting bounced around from doctor to doctor without any answers is getting hard to take. Whenever they find something they end up deciding that it's not what's causing the problem... :/ I apologize if this rambles horribly, I just got done taking a test for a class and my brain is fried :)

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55 Replies:

  • Have any of the following been considered by your doctor's and if not...why not?Chronic Fatigue SyndromePost Viral Fatigue SyndromeMyalgic Encephalomyelitis research information on these illnesses. There is alot just in this forum alone. There is much more on the web find someone who does NAET or Bioset therapy. It will help.I wish you well.....mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thanks for the quick reply!We had asked my family doc about CFS shortly after I "got better" from the CMV and they told me a) it was normal to be tired after a severe viral illness, b) the extreme fatigue could be exacerbated by "women's problems" and "it's not CFS"have you had any of what you listed/know anyone who had it? I did some reading about it and it REALLY seems to fit. the pseudo-diagnosis of microprolactinoma last summer never quite explained some of the stuff. I definitely want to make sure I go in with as much information as possible once I make another appointment to see this guy to find out wtf I should be doing so that I can kind of force the issue a bit.
    violachica286 13 Replies Flag this Response
  • Thanks for the quick reply!We had asked my family doc about CFS shortly after I "got better" from the CMV and they told me a) it was normal to be tired after a severe viral illness, b) the extreme fatigue could be exacerbated by "women's problems" and "it's not CFS"have you had any of what you listed/know anyone who had it? I did some reading about it and it REALLY seems to fit. the pseudo-diagnosis of microprolactinoma last summer never quite explained some of the stuff. I definitely want to make sure I go in with as much information as possible once I make another appointment to see this guy to find out wtf I should be doing so that I can kind of force the issue a bit.Get another doctor honey, like a Traditional Chinese Medicine Doctor who practices NAET or Bioset. Our standard of health is not what it should be. Regular doctors won't listen- they don't even write down what we describe as our symptoms. Use them as much as you need them, but continue trusting yourself.Best,Fruity.
    Eatafruit78 960 Replies Flag this Response
  • How is the exhaust system on your vehicle? Have it checked and repair it if it needs it. Try a carbon monoxide detector for where you live and see if that brings in something. Borrow a friend's for the night if you can't buy one.
    Monsterlove 2921 Replies Flag this Response
  • yes, find a new doctor. Call around and find one who has already diagnosed patients with CFS. He will be the one who is ahead of his game. The only thing a western doc will do though, is diagnose you and give you meds to control your symptoms. You need to get to the root of the problem wiith NAET or Bioset therapy. There are also antivirals that CFS patients are taking that help.Research more on CFS. Diet is a major role in this disease. It also affects your immune system so you will probablt need vitamins, herbs. The herbs will do what the meds do, just without damage to vital organs. Stick around this forum. There will be more info on the way and we will all learn alot. I have CFS. I was very sick. Noone believed me. My tests were normal and I didn't look sick. The problem is that this illness works on a cellular level. Hence the fact all the people in this forum have mostly normal test results and the ones that are abnormal are just diagnoses that are in fact, symptoms of the bigger picture. The big picture is CFS.Take Care and be well....mommy cat
    mommy cat 1654 Replies Flag this Response
  • thanks! I went for more bloodwork yesterday, so I guess we'll see if that shows anything and regardless, I'm gonna bring it up w/ my doctor and insist that they send me to see an infectious disease specialist in Philly. My doc's office wasn't terribly familiar w/ CMV (though the PA managed to think to test for it after the doctor ran out of ideas, giving me some faith in at least one of the people at the office) so it would probably help to see a doctor who would have a better idea of long-term implications.
    violachica286 13 Replies Flag this Response
  • one more question--when i was in the hospital last summer they were quick to dismiss as a panic attack, even though i wasn't anxious until after i had started feeling sick (palpitations, chills, etc) and the feeling wasn't passing. is it normal for your body to act as though you're having a panic attack (tightness in chest, palpitations, etc) with CFS?side note: went for bloodwork yesterday...we'll see what the results bring, and then I'm gonna push to see an infectious disease specialist in Philly that my doc up at school (far more attentive than my home doc) recommended to me because he apparently DOES believe that CFS exists.
    violachica286 13 Replies Flag this Response
  • one more question--when i was in the hospital last summer they were quick to dismiss as a panic attack, even though i wasn't anxious until after i had started feeling sick (palpitations, chills, etc) and the feeling wasn't passing. is it normal for your body to act as though you're having a panic attack (tightness in chest, palpitations, etc) with CFS?side note: went for bloodwork yesterday...we'll see what the results bring, and then I'm gonna push to see an infectious disease specialist in Philly that my doc up at school (far more attentive than my home doc) recommended to me because he apparently DOES believe that CFS exists.Yes- CFS has the wrong name- it should be called Central Nervous and Immune System Dysfunction- the root of it all; not CFS, the external phenomenon. Immune Dysfunction will cause those "panic attacks" because the nervous, immune and emotional messengers in your "body network" are sometimes the same neurotramsitters that share many different functions.In other words- your brain is really all over the body! Your emotions are all over the body! there is no division. There is hope to repair all of this damage that you are suffering- with the new approaches of Psychoneuroimmunology.Ok- If I am making it too complicated- I'll just give you a quick example:I was having panic attacks as part of my allergic reaction. I was allergic to polyester and it would give me headaches, blackouts, and panics. Bad palpitation and hyperventilation.Don't let anyone tell you that you worry in ways that you can't or want to control- there is no automatic pilot. You were not in a "panic" but your chemistry was- it is not your fault, you are not crazy. Trust yourself.Best.Frui.
    Eatafruit78 960 Replies Flag this Response
  • Eatafruit is corect once again!!! Please read "The Truth About CFS/ME".
    mommy cat 1654 Replies Flag this Response
  • viola...by the way, do yourself a favor and get a new doctor. One who has CFS patients already.....stick around, you will learn alot here...mommy cat:D
    mommy cat 1654 Replies Flag this Response
  • Since you've got CFS, do you find it relatively easy to adapt to how you feel and get back to a "normal" life (e.g. - get back to the way you were pre-CFS?)
    violachica286 13 Replies Flag this Response
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  • Since you've got CFS, do you find it relatively easy to adapt to how you feel and get back to a "normal" life (e.g. - get back to the way you were pre-CFS?)Every person is different- but what it rings true for everyone is that with M.E. , CFS or Immune Dysfunction you will need to rest for a long time. If you put too much stress on your body- this can be fatal. You have to isolate yourself from the triggers, you need to have discipline if you want to live.I never went back to school or work- I have been resting for 7 months now- but I am recovering. Right now my treatment has cleared out all pain, headaches, dysautonomia symptoms, GERD symptoms, fibromalgya is gone, inflammation, etc. The only thing that s wrong with me now is my sleep cycle. The moment that my sleep cycle is restored I should be able to go back to fairly close to normal.What you will find is that with the right treamtent you will feel 'better' than you felt before, when you thought you were healthy. Some days are better than others- it does not rain everyday.You'll be okay- as long as you are in charge.I am no afraid of my disease- and I think that is very important..Fruity.
    Eatafruit78 960 Replies Flag this Response
  • In the beginning it is overwhelming. Just like if they told you that you had some "rare" disease. Then you realize that you are not alone. There are many people already diagnosed with this and many many more being diagnosed daily. It is real. Affecting several of us. Once you know "what you have"...it is half the battle. I always was so uncomfotable with the "not knowing" part of this journey. I am a nurse so I did not accept the answers "I don't know" from doctors. I found the information. I realized it was in fact what was wrong with me. I printed the info and took it to a new doctor who had already been treating and diagnosing others with CFS.The trick is to find a "good" doctor who believes in or is familiar with CFS. I have done a lot of research...in every crevice of the web...I am curious george...hehehe...The best advice I've found yet is as follows:Research your illnessTake charg of your own healthcareDevelop your own exercize/nutrition planreevaluate your prioritiestake one day at a timekeep a positive attitudelaughThis is all very good advice when dealing with CFSAlso, seriously, google local NAET or Bioset therapists. They are helping people with CFS everyday. All I know is I feel much better and my BF even noticed that the "sparkle" was back in my eyes.We're here...mommy cat
    mommy cat 1654 Replies Flag this Response
  • yes! the not knowing is the WORST. the CMV wasn't fun but at least we knew what that was. but the constant bouncing from one possibility to another (mitral valve prolapse, vasal vaugal syncope, hyperthyroidism, prolactinoma, pheochromocytoma...) and never having anything confirmed has been driving me nuts.as soon as the bloodwork is back in I can try to convince my doc to send me to Philly to a specialist (and if not, we'll pay for it ourselves and try to get reimbursed by insurance later, since the specialist would normally be covered since he's in the plan)it would/will be so nice to just have a name to put to some of this stuff! and it's nice to see other people who've gone through similar situations with difficulty in diagnosis! makes me feel less alone in that regard.
    violachica286 13 Replies Flag this Response
  • vio...you are not alone...How funny...I was diagnosing myself with phaeochromocytoma before I was diagnosed by a doc with CFS. I was also misdiagnosed with carcinoid Syndrome by 5 docs. There are several of us here with CFS and we are willing to help in any way we can...Be well...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Violachica, I think you need to sort out another endocrinologist. The symptoms you are describing are syptomatic of adrenal dysfunction and you need to find out what this small mass on your pituitary is (it could cause these problems, although don't get too alarmed by it). The electrolyte imbalance is another indication that something is wrong along these lines.
    Anonymous 42789 Replies Flag this Response
  • Violachica, Please be aware that adrenal misfunctions, pituitary issues and electrolyte imbalance are also part of CFS/ME. Many glands in the body are affected like the pituitary, thalmus, hypothalmus, adrenals ect...An endocrinologist will be able to help you with these issues but they are just infact a part of the bigger picture. I wish you the best...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Violachica, I think you need to sort out another endocrinologist. The symptoms you are describing are syptomatic of adrenal dysfunction and you need to find out what this small mass on your pituitary is (it could cause these problems, although don't get too alarmed by it). The electrolyte imbalance is another indication that something is wrong along these lines.well their eventual theory was that perhaps there wasn't a mass there afterall, maybe my pituitary has a bit of an odd shape, etc. the radiologist's report had been somewhat inconclusive in that regard but the radiologist had said to go to the endo, which we gladly did. but none of the dozens and dozens of blood and urine tests they ran last summer indicated any adrenal dysfunction 'cept for the slightly elevated prolactin, which no one seemed terribly concerned about.as for the electrolyte imbalance, that only showed up in hospital tests, and part of that is that they thought i was dehydrated. well sure, when i'm waiting in the waiting room for 4 hours and then they forget to hook you up to an IV, your fluids get depleted and your electrolytes get out of whack. we'll see what the prolactin level looks like when the results come in on tuesdayish (no idea how the holiday will affect things)
    violachica286 13 Replies Flag this Response
  • Increased prolactin is another consideration of CFS.:( Mine is normal...so far. So are all of my adrenal function tests. Wishing you well...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Every person is different- but what it rings true for everyone is that with M.E. , CFS or Immune Dysfunction you will need to rest for a long time. If you put too much stress on your body- this can be fatal. You have to isolate yourself from the triggers, you need to have discipline if you want to live.I never went back to school or work- I have been resting for 7 months now- but I am recovering. Right now my treatment has cleared out all pain, headaches, dysautonomia symptoms, GERD symptoms, fibromalgya is gone, inflammation, etc. The only thing that s wrong with me now is my sleep cycle. The moment that my sleep cycle is restored I should be able to go back to fairly close to normal.What you will find is that with the right treamtent you will feel 'better' than you felt before, when you thought you were healthy. Some days are better than others- it does not rain everyday. You'll be okay- as long as you are in charge.I am no afraid of my disease- and I think that is very important.. Fruity. fruity.. I had terrible sleep issues every night with the CFS/ME.. reversed sleep cycle among other sleeping problems. I had that treated and all fixed (so sleep great now) by homoeopathy and a technique like hypnosis. I thought I would mention this to you. Best luck with fixing that symptom
    taniaaust1 2267 Replies Flag this Response
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