Discussions By Condition: I cannot get a diagnosis.

Someone please tell me what's wrong with me!

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • May 25, 2011
  • 05:09 AM

I have been sickly my whole life, with absolutely no explanation. According to all my blood work I'm basically healthy. I started out with two basic symptoms: fatigue and chest pain.

Through the years more and more symptoms have presented themselves and the pre-existing ones have gotten worse. I've been treated for and/or told the following in this order over the years:
-anxiety, depression
-arrythmia of the heart, which later became known as the cardiac anamoly since several cardiologists have stressed there is nothing wrong with my heart in spite of persistent chest pain and the fact that I'm currently on beta blockers because my heart cannot keep a steady pace or rhythm
-some kind of thyroid condition, not sure if it was hyper or hypo. I had one lab come back abnormal all others have been normal
-i was also told that my problem was that I had a heavy period and was placed on birth control and iron pills.
-syncope (fainting)
-angina

My symptoms as of now are:
- chest pain accompanied by shortness of breath
- extreme fatigue (daily activities such as showering require frequent rest breaks)
- joint pain/stiffness/swelling (swelling particularly in legs, pain and stiffness affects all joints; aggravated by rainy and cold weather)
- irritability/moodiness
- headaches
- dizziness (vertigo)
- feeling full quickly/ lack of appetite and nausea
- insomnia
- night sweats
- difficulty concentrating
- intolerance of heat
- fainting spells (syncope)

I am currently being treated for vitamin B12 deficiency anemia and iron deficiency anemia which are the only things that have ever come up as abnormal in labs. I am also on beta-blockers to regulate my heart rate.

I have family history of lupus and various forms of cancer on my mothers side of the family and heart disease and diabetes on my fathers side.

My doctor asks almost no questions and keeps brushing me off because my lab work is always normal. I've been hospitalized twice and all tests have come back normal.

What is wrong with me??? I'm in chronic pain which is made tolerable by otc ibuprofen which I take 800 to 1600 mg daily and no one seems to appreciate the fact that I have been unable to work for the past 6 months due to the extremity of my symptoms.

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  • All your symptoms can be caused by Postural Orthostatic Tachycardia syndrome (POTS). From what you've said, I think there is a 90% chance this is your problem. POTS is a type of dysautonomia so affects the heart regulation (but the heart will be healthy so it isnt a condition that cardiologists tend to know much about or test for as they generally look for heart issues.. Ive got POTS which causes me to faint and have seen 2 cardiologists and neither of them knew about the condition). POTS is an autonomic nervous system dysfunction... the ANS controls many of the bodies functions including appetite POTS will cause bouts of tachycardia (and can cause irregular heart beats) which may not be noticed by 24 hr monitoring as they may put down the heart rate increases to you exercising at the time even if you arent. Certain heart monitoring has to be done in view of heart rate IN ACCORDANCE TO POSTURAL CHANGES or more commonly tilt table testing is done to diagnose POTS. Activity, heat are very common things which worsen POTS and may lead to a faint. The good news is that POTS can be treated or helped some in many. You need to get yourself properly tested for POTS. http://www.dinet.org/ for good info on POTS (on left of that page click the symptoms link and you will see all yours are there). As this is a condition that doctors are only just starting to learn about... it can be quite hard to find a doctor. On youtube.. there is a three part eposide of "Mystery diagnoses" of a women who has POTS. (I think in her case it took 15 years to get a diagnoses and they gave her a pace maker as they didnt know what her issue was.. note. POTS patients dont usually get pace makers as there are medicines eg beta blockers and other things which can help POTS some). I noticed you said you are already on betablockers.. so that is good you already are doing something which helps treat POTS. You need to raise your fluids (drink lots of sports drinks) and salt is very important for POTS patients. (some have saline infusions or take salt tablets..others just increase salt intake). There is other treatment advice at that site I put the link up for. I highly recommend learning what your various POTS triggers are and trying to avoid those and avoid mixing triggers together eg in my case if i eat out in a warm restaurant .. a quarter of the time that is enough to floor me and people have to carry me out. Heat is a trigger.. eatting in my case with just a little heat is a worst trigger. (some women are more triggered at certain times of the month) best luck.
    taniaaust1 2267 Replies Flag this Response
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