Discussions By Condition: I cannot get a diagnosis.

3 yars, 8 dr's, and nobody knows

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • August 2, 2009
  • 02:19 AM


Hi Members,
I am new here as of today. Does somebody recognize my symptoms, it feels like my days are on a count down. If somebody recognizes my extensive list, please let me know. I have been to 8 Dr's and they are clueless. These are my symptoms, some are worse, and some are just observations;
Born 1966
Father and mother smokers
Grew up with asthma
Got vitilago at age 32

Main problem: imbalance, surreal feeling, extreme exhaustion, fatigue

Started summer 2006 when I took Claritin; I had small dizzy spells for a day or two with months between.
After a turkey dinner that fall, I got very dizzy and threw up.
We thought it was from mold in washer and got rid of it
Then we thought it was carbon monoxide poisoning from our vent free fire place, and got rid of it.


I notice a swooshing in my head with my heart beat same as when I did extremely strenuous cardiovascular exercise.
I got glasses, and they made my vision worse.
My testosterone is lower according to blood work.
I am depressed at this time, and I think it is due to my situation verses the other way.
I get drunk from one or two beers.
I feel better in the morning, and I haft to nap mid day.
I took large amounts of ephedrine in my 20s, and 30s, thinking of scar tissues on my vascular system, catching and building plaque.

I sometimes feel better suddenly, like a "click," then later back to discomfort again; this also happens before I get sick.
Sometimes lately I feel very shaky, like I am full of caffeine, & the morning after I have 3 beers I can barely grab the TV remote (this began to worsen about 2 weeks ago when I also started iron supplements).

Below are more issues that I have noticed for 3 yrs. The notes are scrambled, some are repeats, but please read, and hopefully we can figure something out. The highlighted notes are the issues that are stronger, and bothering to me.


Small trembling all the time
my eyes feel uncomfortable when I look up in the corner
In 2006 I felt weird at dusk, and still do
*I now get drunk on two or three beers
My heart beats hard
*I have lost a lot of muscle tone
*Resting heart rate at 80-90 bpm, maxing out at about 140
I can run but if I strain hard i.e. when I pushed my neighbors car I get extremely exhausted.
*I shake, mainly in the mornings
*My vision is disappearing or blurring, and I got glasses, but they made it worse
*Have to hold on to things while working
*I take side steps often
Vision better if I tilt my head back slightly
*I am dizzy all the time now
Feel decent while driving my car or motorcycle
*Have to nap at break time or I crash
Seem to stutter more
*Can NOT keep muscle mass even though I work out 4x week
Gaining body fat all the time
*Almost always pain in my right abdomen, and it moves around. I have had that for 5-7 years on and off. Sometimes there are intense pains.

*Sometimes scratching my nose or face, it seems like I cannot “aim” correctly.
*My shaking is amplified after strenuous activity.
Heart races sometimes when standing up from seated position.
*It feels like “brain fog” and I feel like shaking my head to clear it.
I hear a swooshing in my neck or head with my heart beat
Sometimes I have a hard time following conversations.
**My neck is hurting on the sides.
I always hear a little noise in my head like TV static.
I am depressed, and I think it is due to this issue, but I could have been depressed before
Forgetful
Feeling very cold
Heart rate goes up when going up a flight of stairs
**70% weaker than I used to be.
Flu-like symptoms.
Anxious.
Trouble concentrating.
I think I feel better just before I get sick i.e. a cold or virus.
My testosterone both regular & free is on the low end (& I feel it)
Frequent heart palpitations
Feel better in the morning after shaking is gone
I am very weak but yet not, meaning I can still push up 80 lbs dumbbell with one hand.
*I am swaying now noticeably.
I have extremely poor balance but again yet not; I can do an overhead press standing on a physio ball.
I don’t understand what I read as easily.
*Can this all be due to poor liver function (constant right side pain) so that I always have waste products circulating?
Took steroids ages 18-21
*Used to put sunscreen in my hair & eye lids for the last 8 years due to vitilago
*Constant head ache top right ( but had MRI checking MS 2 years ago and it was ok)
My D level was 2% of normal
My lithium was very low
*Vision is VERY blurry, close up and far away.


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4 Replies:

  • From what you said.. it's possible that you may have two different conditions going on there.. one which has probably been caused by having the first issue.Heart races sometimes when standing up from seated position.Heart rate goes up when going up a flight of stairs There is a condition called Postural orthostatic tachycardia syndrome (POTS) which most doctors know very little about if they have heard of the condition at all. This condition causes ones heart rate to increase over what is normal on standing as ones body struggles to adjust with the postural change. (The diagnoses can be made just from that symptom alone). http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome i suggest you read this link which includes the other symptoms on top of the heart rate one or palpitations, which you may get with POTS "The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 10 minutes of head-up tilt." i have POTS myself along with the other condition im about the suggest too. The POTS side of it took doctors/specialists 11-12 yrs to diagnose as none of them knew about this condition. I now have treatment for that side of things and im much, much better :) If you go to www.youtube.com . There is a great "mystery diagnoses" eposide on Postural orthostatic tachycardia (POTS) there (a severe case of it thou). In it the girl talks about how her husband realised that there was something very wrong with her due to her heart racing on climbing the stairs. ..................... Many of those who have POTS have chronic fatigue immunity dysfunction syndrome (CFIDS)... POTS is a common outcome from having CFIDS or one can have POTS alone with no other illness. POTS and CFIDS actually share MANY symptoms (you will see a huge range of symptoms POTS can cause on link i gave) but there are symptoms in CFIDS which dont happen if its POTS alone. The fact you said you have "flu like symptoms" points towards that you have CFIDS too and the POTS is due to the CFIDS. Flu like symptoms are one of the classical CFIDS symptoms. CFIDS patients get all kinds of symptoms and alcohol intollerance is very common in CFIDS patients. I suggest to check out the CFIDS list at http://wwcoco.com/cfids/bernesx.html Unfortunately the CDC say that 80% of patients with this illness are sick and remain undiagnosed. (this is cause doctors often dont know all that much about this illness as they arent up to date with it... thou they would of heard of it). The illnesses (both of them) will make your vision blurry and come and go. Your eye issues may be nothing to do at all with your actual eyes but rather with blood flow going throu your brain etc. It isnt uncommon for CFIDS patients to be having to get different glasses all the time. (i myself was told i needed glasses as when checked, my vision was very bad. I never got the glasses and went back to get them 2 yrs later.. only to find out on retesting that my vision is now perfect!. The eye doctor was dumbfounded as he'd never seen someone with my vision issue correct itself and it should of worsened). You really will need to research CFIDS..or find a doctor who specialises in this illness (eg is experienced in helping CFIDS patients). best luck ps.. i forgot to tell you and i dont think it was on that CFIDS symptom list. That fast heart beat at rest is a common symptom of CFIDS too. Get the POTS treated.. that alone may help some of your symptoms eg the dizziness quite a bit
    taniaaust1 2267 Replies Flag this Response
  • From what you said.. it's possible that you may have two different conditions going on there.. one which has probably been caused by having the first issue. There is a condition called Postural orthostatic tachycardia syndrome (POTS) which most doctors know very little about if they have heard of the condition at all. This condition causes ones heart rate to increase over what is normal on standing as ones body struggles to adjust with the postural change. (The diagnoses can be made just from that symptom alone). http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome i suggest you read this link which includes the other symptoms on top of the heart rate one or palpitations, which you may get with POTS "The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 10 minutes of head-up tilt." i have POTS myself along with the other condition im about the suggest too. The POTS side of it took doctors/specialists 11-12 yrs to diagnose as none of them knew about this condition. I now have treatment for that side of things and im much, much better :) If you go to www.youtube.com . There is a great "mystery diagnoses" eposide on Postural orthostatic tachycardia (POTS) there (a severe case of it thou). In it the girl talks about how her husband realised that there was something very wrong with her due to her heart racing on climbing the stairs. ..................... Many of those who have POTS have chronic fatigue immunity dysfunction syndrome (CFIDS)... POTS is a common outcome from having CFIDS or one can have POTS alone with no other illness. POTS and CFIDS actually share MANY symptoms (you will see a huge range of symptoms POTS can cause on link i gave) but there are symptoms in CFIDS which dont happen if its POTS alone. The fact you said you have "flu like symptoms" points towards that you have CFIDS too and the POTS is due to the CFIDS. Flu like symptoms are one of the classical CFIDS symptoms. CFIDS patients get all kinds of symptoms and alcohol intollerance is very common in CFIDS patients. I suggest to check out the CFIDS list at http://wwcoco.com/cfids/bernesx.html Unfortunately the CDC say that 80% of patients with this illness are sick and remain undiagnosed. (this is cause doctors often dont know all that much about this illness as they arent up to date with it... thou they would of heard of it). The illnesses (both of them) will make your vision blurry and come and go. Your eye issues may be nothing to do at all with your actual eyes but rather with blood flow going throu your brain etc. It isnt uncommon for CFIDS patients to be having to get different glasses all the time. (i myself was told i needed glasses as when checked, my vision was very bad. I never got the glasses and went back to get them 2 yrs later.. only to find out on retesting that my vision is now perfect!. The eye doctor was dumbfounded as he'd never seen someone with my vision issue correct itself and it should of worsened). You really will need to research CFIDS..or find a doctor who specialises in this illness (eg is experienced in helping CFIDS patients). best luck ps.. i forgot to tell you and i dont think it was on that CFIDS symptom list. That fast heart beat at rest is a common symptom of CFIDS too. Get the POTS treated.. that alone may help some of your symptoms eg the dizziness quite a bit
    Anonymous 42789 Replies Flag this Response
  • Have you considered Lyme Disease and other tick borne illnesses? Lyme disease is a multi-systemic disease that is so often undiagnosed by physicians. Your symptoms raised a red flag to me for Lyme Disease.I can direct you to some helpful and informative websites that explain the truth about the horrible disease(s) caused by ticks. It does NOT matter if you don't recall ever having a tick bite, and it does NOT matter where you live.I am not sure if I am allowed to post websites on here, so if you are interested I will email them to you or post them if I find out that I am allowed.
    Anonymous 42789 Replies Flag this Response
  • try checking out Arnold-Chiari Malformation I. It is a rare disease that has about a gazillion symptoms like ones you describe. I found out about it at the Chiari Institute in NY, or try www.conquerchiari.org for info and links
    Anonymous 42789 Replies Flag this Response
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