Discussions By Condition: I cannot get a diagnosis.

Completely debilitating symptoms with no diagnosis

Posted In: I cannot get a diagnosis. 69 Replies
  • Posted By: Jonny2777
  • April 2, 2007
  • 06:08 AM

I'm a 20 year old male and for years have been suffering from ongoing symptoms of an unknown cause. I lived with them for a while, thinking maybe I was just a woos or psycosomatic. The last few months it has been getting worse, and is right now completely debilitating, I'm too dizzy and lightheaded to even drive. If you can relate, or have heard of, or have any idea about anything, please help.
Constant Dizziness
Constant Light-headedness
Chronic fatigue
Lack of concentration
Frequent urination/bowell movements
Excessive sleep (10 hrs a night)
Mild-moderate headaches
Low blood pressure when standing from sitting or lying position
Worsening of symptoms with physical exertion

I've had many tests done like a Complete Blood Count, Urinalysis and a few others from an endocronologist. These have ruled out the most probable disorders such as, diabetes, anemia, thyroid disorder, hormone deficiency, and others. I'm currently taking Florinef which is meant to help raise blood pressure and circulation, but it isn't working.

If you know of that could help I would really appreciate.



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69 Replies:

  • Ehhh- I say check into Environmental Allergies and Food Allergies.Go to NAET.com and read the testimonials, you might find something that sounds like you.I suffer right now from similar symptoms when exposed to mold, chemicals, printed materials, and polyester. I don't even have to see the allergen- even when I am sleep if I come in contact to it ( a polyester blanket or pillow for example) I would suddenly wake up thirsty and have a black out.Before, I could not pint point to environmental allergies- I would go to the hospital and "hyperventilate" "have panic attacks"- I would know that people were talking to me but I could not understand what they were saying.You need to get your blood pressure check and your temperature check when you start feeling funky. My blood pressure and temperature start dropping and I start feeling drunk, cold, dizzy, confused. When that happens, I now take about 800 mg of powder Vitamin C ( disolve in a small amount of juice) and /or drink the "Detox Tea" with Dandelion of Yogi Tea Brand. I also try to get some fresh air and water.I went to 5 different doctors- only one thought it was allergies (the other ones told me I was just a sad little person and try to give me sleeping pills) but he still would not listen to me. He did not have a plan to reverse the problems. Not even when he found out how bad my lung capacity was he could come out with a therapy.When I touch or inhale polyester, I have to pee a lot- Moldy polyester gives me headaches. I always suffered from migranes, but no more.Even if you feel like my symptoms are totally different- everyone is different- but if you eat lots of processed food, lots of pastries, bread, aspartame, sodas,etc. try to eat healthier food like leafy greens, brocolli, spinach, fruits, because it will make you stronger to the symptoms- try to eat food that you don't regularly eat, as you have less chances to be allergic to it.Pretty Soon I'll be treated for those allergies- by the way, determining what is making you sick with NAET, is very easy. Take Care.
    Eatafruit78 960 Replies Flag this Response
  • Thanks for the reply. I should have mentioned that I am very fit and eat very healthy. Before my symptoms became so severe I would workout 6 times a week and eat exactly what I needed too. I have no idea what could be causing this and neither do my doctors.
    Jonny2777 8 Replies Flag this Response
  • I wonder if you're suffering from overtraining syndrome? What type of exercises were you doing- endurance or aerobic? Did you take off enough days? Are you still exercising now? Have you been to a cardiologist to make sure your problem isnt heart related? Much of what you describe can be from blood pressure related problems, and that can stem from heart related issues. You can also go to a neurologist/have a brain CT or MRI to make sure there isn't anything wrong up there (tumors, etc).Doesn't sound like allergies to me.
    Anonymous 42789 Replies Flag this Response
  • Have you had a electrocardiogram (EKG) or echocardiogram? Sounds like some of the symptoms I've been having with Mitral Valve Prolapse.
    Anonymous 42789 Replies Flag this Response
  • Sounds very similar to symptoms my son has. He's 17, a junion in high school, and pretty much missed the last quarter. He's also a varsity wrestler...or was, until this occurred.We've been through all the test you've had, and many more. (In the past couple of months, 2 CT scans and 2 MRIs, for instance.) Just got the latest results of the latest MRI, which shows no damage to the 7th and 8th cranial nerve, which can cause the lightheadedness and vertigo.A couple of random thoughts on your situation, based on what we've been through with our son.Do some more research on the HPA (hypothalmus/pituitary/adrenal) complex. Most endocrinologists do not use sophisticated tests to measure these levels, and you need something that measures levels throughout the day, not just a one-shot test. Research on Google will turn up some options.It's probably tied in to the autonomic nervous system--that is, whatever is affecting you (and my son) affects that system. That explains the low blood pressure...though check to see whether it occurs just when you're standing, or whether it's also present when you're seated. Our son was (incorrectly) diagnosed by one of the four or so neurologists he's seen for the condition (name slips my mind) defined by a 20+ drop in blood pressure upon standing. Florinef was suggested. But that drug has a lot of side effects, and initially you're better off trying to increase your intake of water and other fluids. After that neurologist, we took our son to a cardiologist for a tilt table test, which confirmed the low blood pressure, which is worsened positionally. But if it were just that, he (and you) would be perfectly OK while lying in bed; it'd just affect him (and you) when you got up, or were standing. That's not the case with him or you.The worsening of symptoms with physical exertion is normal. (Again, sorry, we don't have a diagnosis, either. But we can certainly describe the symptoms.) On the other hand, we've found that he doesn't much improve even if he sleeps 14 hours a day and spends several more lying down playing video games. Slight to moderate exercise seems beneficial, even though it does take a lot out of him the next day. So you have to know how much to do, and when to hold back. One thing he's told us is that there's a mental component to this, too. That is, after a period of being wiped out, he feels better, in certain ways, with activity. It relieves his stress, even though it's putting additional stress on his body. So, with us, it's a balancing task.Question: Are you on any other medication...not for this? An SSRI like Zoloft? Or something else that can affect brain function? Those symptoms are an awful lot like withdrawal from Zoloft. Now, the research suggests that in general, and particularly for Zoloft, generic brands have the same effect on the brain. But I'd still wonder if you've switched from the brand name to a generic, or even from one generic to another. Interestingly, as a side note, all the research I've found on Zoloft--brand versus generic--involved tests on healthy subjects. The tests weren't long-term on people who really had to take Zoloft. So...not discounting the research, but expressing skepticism.Let's see...what else? You probably ought to get tested for infectious diseases. Some can mimic the symptoms you're experiencing.And have you been tested for mononucleosis? Our son was, with puzzling results. First test came back positive for mono antibodies. Second test (which we insisted on a few months later) came back negative...which is impossible since the antibodies stay in the system. Third test also came back negative. We assume the first test was in error, unless it was detecting some sort of....something.With this condition (whatever it is), the immune system also seems depressed. It's easier to catch colds and infections. And...did you experience some sort of infection shortly before the onset of the symptoms? Our son had a significant one...then (probably after his immune system was already weakened) had another (impetigo)...had several courses of antibiotics to get rid of it...and the antibiotics may have had negative effects (simply put, wiping out the body's good bacteria along with the bad).I could go on and on about this, but that ought to give you at least a few new avenues to pursue. Keep us posted
    Anonymous 42789 Replies Flag this Response
  • wordsmith- did your son have the complete panel of Epstein-Barr Virus antibodies checked? There are more than one actually. Two basically detect for a current/recent infection and others check for a past infection (but antibodies). If your son tested positive for EBV and then later tested completely negative (as in ALL of the readings) then it would seem he had a false positive. Though I seem to recall that at times lyme disease can give a false positive for EBV.
    Anonymous 42789 Replies Flag this Response
  • See a cardiologist
    sterlingo 3 Replies Flag this Response
  • How about seeing a ENT for the constant dizziness? While I know that low pressure or heart rate can cause those symptoms inner ear can cause the same.....have had both. I can go 2 or 3 weeks with dizziness and fatigue to the point I want to sleep or lay down. Fumes from most anything can set mine off or a change in my blood pressure causes it also.ENT told me I am one of the unlucky ones to have a very sensitive inner ear problem. I had the whole cardio workup done and nothing was found wrong with me other than it drops to 45 during sleep or 50 sometimes in just walking around.As for the having no energy to get out of bed, I have been put on Provigil and it is a wonder drug!! I now can make it thru a day working 9 or 10 hrs ...for a doctor no less! Recently at my checkup with internal medicine doctor he told me a month ago I was in total exhaustion and over stressed. Now I go to bed by no later than 10:30, wake up take my Provigil, take lexapro to help blood pressure without it bothering my heart rate, and am trying to get stress level down. Saw him a month later (last week) and he could not believe the change in me.So my suggestion for whats it worth is see the ENT about inner ear and ask about Provigil to help get out of bed.
    agypsygrl 79 Replies Flag this Response
  • Could be Lyme disease. The "two-tiered testing" is not as accurate as docs think it is, though, about a 25% false negative rate seems to be the case, so if they say you test negative, don't completely rule it out. If you test positive and they treat you, make sure you get longer-term antibiotics (it seems like oral ones are okay if dosage is sufficient and if the treatment is for long enough, I'd say at the very least 2 months. It's hard now to find good treatment and diagnosis for Lyme, there are some influential bigwigs who are misinforming the medical community.
    Anonymous 42789 Replies Flag this Response
  • Wordsmth: Whatever your son is suffering is exactly what I'm suffering from, the symptoms are exactly the same and even the situation sounds the same. I was a varsity golfer when all this happened planning on playing in college on scholorship, now I can't even drive. Just as you mentioned, I had a horrible flu/sinus infection about 2 months ago, it lasted for about 3 weeks, and ever since then my symptoms have become much worse. I've been suffering from the dizzines/light-headed/fatigue for years, but I was still able to function, sort of. This could be a big help to both of us, finding someone with exactly the same issues. Can you give me any additional information about what your son has been through? Like what tests have been done, what doctors you've seen, any additional symptoms, anything. And I'd be glad to do the same for you. My e-mail address is Jonny2777@aol.com, it may be easier through e-mail. I have had a history of psychiatric problems, but it's really not worth mentioning because I've recovered and gone off all of my medications that could cause issues like this. I was on seroquel and wellbutrin. I did have withdrawal symptoms from the seroquel and I'm not completely off the wellbutrin, but have gone down significantly, and my symptoms have only worsened. I've done a lot of research trying to figure this out and would like to mention what I've come up with as possible diagnosis, in hopes of helping your son. You mentioned the Autonomic Nervous system, and that is definitley a possibility. The fludrocortisone I'm taking now is for a lot of possible problems, but the main one the endocronologist mentioned was: Autonomic Neuropothy from an uknown cause. I did have a water deprivation test, and it all came back normal, but you mentioned something about testing the levels throughout the day? I didn't have anything like that done, but if it could help then I'll plan on talking to him again. Here's what I've come up with so far: Autoimmune disorderAddisons diseaseAutonomic neuropothyHeart diseaseCNS disorder/diseaseCerebral Hypoxia (This isn't a disease in itself, but anything that causes a lack of oxygen to the brain would fit mine and your sons symptoms.) There's others like hypotension and diabites, but I'm sure just like me, your son has already been tested for them mulitple times. An infection somewhere inside the body could be a possibility, but I don't know a lot about that or where it could be/be cause from, but I figure it's worth mentioning. I'm sure there are hundreds of more possibilities, and I plan on doing more research in finding a cure for both me and your son. In my opinion, an autoimmune disorder sounds like the most probable out of what I've mentioned, considering both of us had a terrible virus/infection before the symptoms became so bad, and that they aren't easy to diagnose Thank you for your reply, and I look forward to hearing from you. Again, my e-mail is Jonny2777@aol.com. I'm sorry for what your son has to endure, because I definitely know how bad it is. P.S. if anyone has any additional information/experience with this, I would greatly appreciate your input. Thanks, Shane
    Jonny2777 8 Replies Flag this Response
  • Also, I did look into Lyme disease, and it definitely seems like a possibility. I plan on calling a specialist tomorrow and set up an appointment right away. Wordsmth: Do you know if your son has been tested for Lyme disease? I did some reading on it and in it's later stages it can cause a variety of problems that could be related to both of our symptoms.
    Jonny2777 8 Replies Flag this Response
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  • It sounds like Chronic Fatigue and or Fibromyalgia. Both of these are "wastebasket diagnosis", meaning there is no real test that they can perform that will test positive for these diseases. They can only come to this conclusion after they've ruled out everything else. I have Fibromyalgia. Fortunately, my doctor recognized it right away. Most people go for years before being properly diagnosed. Normally, it is an arthritis doctor or a pain doctor that diagnoses these two diseases. Good luck!
    lgmeridieth 1 Replies Flag this Response
  • I have the same exact sympotms. I am a 30 year old mom of the twins. This all started after the birth of my babies 10 months ago. I have had many tests that you should have.CBC24 hour cortisolall hormone levels SED ratetilt table testinginner earEKG Echocardiogram48 hour holter monitorstress testelectrical studies of the heartPheochromocytoma (tumors on the adrenal gland)MRI of brainAll tests were normal so far. My aunt who is a nurse thinks it may be postural orthostatic tachycardia syndrome with chronic fatigue. I am going back to the doctor soon.
    Anonymous 42789 Replies Flag this Response
  • I doubt it's Fibromyalgia, unless you have symptoms sensitive to weather or environmental change, and have the sore points (Google the condition to see a diagram of where they should be.) Most of your symptoms sound like a result of the low blood pressure...so I would definately see a cardiologist. Lyme Disease also sounds plausible, so make sure you're tested a couple times even if it comes back negative...the tests can be unreliable.
    deadlysauce 67 Replies Flag this Response
  • It's definitely not Fibromyalgia, I don't have pain at all, and I'm almost sure it's not Chronic Fatigue Syndrome as well. Fatigue is definitley a problem for me, but not the worse or main symptom. The fatigue I seem to be experiencing probably come from something like malasia, just all around feeling like crap. Although I do sleep a lot at night and feel worse when waking up, insted of refreshed, the dizziness/light-headed is the worst symptom.
    Anonymous 42789 Replies Flag this Response
  • By the way, I just realized it can't be Lyme disease. I was on Doxycycline for a few months for acne, which also happens to be the main treatment for Lyme disease
    Jonny2777 8 Replies Flag this Response
  • Maybe its something like Iron deficiency anemia. Forgetfulness, dizziness, lack of concentration, low blood pressure, some of them fit the category, but then again, I see that CBC was done. Postural orthostatic tachycardia syndrome does fit the category, but it is quite hard to diegnose. Alergic reaction triggered by chemicals at the golf course is also possible too.
    Anonymous 42789 Replies Flag this Response
  • It could still be Lyme, if the dose of doxy was low and not long enough. I have lyme, and over the yrs had been on abx for other things, those abx didn't touch the lyme. You would need 400 mgs of doxy a day for a long while for it to get the Lyme. Visit this site and ask questions Best wishes lymenet.org
    Anonymous 42789 Replies Flag this Response
  • It's not any form of anemia, I've had every blood test done possible. I looked into postural orthastatic tachycardia, and that does seem like a possibility, or something similar at least, like Neurally mediated hypotenstion. I don't know though, the symptoms are similar, but it all doesn't seem to add up. Although it rarely does in medicine
    Jonny2777 8 Replies Flag this Response
  • Jonny2777,Sounds like you have been taking meds in the past, but what are you currently taking on a daily basis? Are you still on wellbutrin? What meds were you prescribed for your sinus infection? DOM
    acuann 3080 Replies Flag this Response
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