I can't help myself if I don't know where to start

[notahypochondriac81]

Seeking guidance~ Since 2010 I have had a ct, an mri, they went up my nose with a rubber hose (literally), I've had my thyroid tested, two endoscopes, an upper ct, an ekg at my last pap, the sticky pads and ultrasound on my legs. HOWEVER~ I am still having respiratory issues, I notice when I try to curl my hair I cant hold my hands over my head very long and my legs always ache and burn, and whatever is behind my color bone (maybe lymph node) always hurts. Having maybe adrenal issues it feels like heat stroke or low sugar (very faint and weak)  All these things have revealed "no cause for concern" and "my numbers look good". Why am I still having these symptoms? Who should I see? I feel like I'm just falling through the cracks and somebody is gonna have to tell my kids "if we only caught it sooner". Is it a neurologist? an oncologist? a cardiologist? I am tired of being probed and quite frankly exhausted in general. I do have a diagnosis of cebv. Thanks.

[achillea]

You have apparently been having some type of medical problem that sent you to a doctor sometime around 2010.  Subsequent to that, you have had many tests.  One of them involved "a rubber hose up your nose."  What was the specific complaint that caused this exam, and what were the docs looking for?

There were lots of other tests, for which explanations are necessary if we are to weigh in here.  So I have to ask these questions:

Why was your thyroid tested?  Did they do a TSH or T4, for example?  Did they do an ultrasound of your thyroid?

What kinds of endoscopies were done, and why?  Have you had a bronchoscopy?  

What area were they looking at with the upper CT scan?  Lungs, heart, pancreas, what?

What respiratory 'issues' do you have?

When you say that something behind your collarbone always hurts, can you describe what you're feeling?  Is the pain symmetrical across your chest?   Does it hurt only when you press on the area?  Does it hurt if you touch lightly or only when you press deeply?  Does it hurt only when you make certain motions?   Does it hurt just when when you inhale or when you exhale?

When you hold your arms over your head, does it hurt when you are taking groceries down from shelves or working out at the gym,  or only when you are curling your hair?  Is the pain constant here, or how long does the pain in this region last when you do certain things?

You say your legs ache and burn.  Do they do this when you are just walking around the house?  Is there swelling or pallor or redness?  Do they ache and burn when you rush around after your kid?  Do they ache and burn as you go through your daily activities?  Are you able to do those normal activities at all--things like shopping, going up and down stairs, taking your child for a walk?   Can you exercise,  or are you pretty much bedridden?

You mention adrenal function.  Be very careful with this subject.  'Adrenal fatigue' is an extremely fashionable idea these days, and it springs from an imperfect understanding or cynical interpretation of adrenal  function.  While 'adrenal failure' and 'adrenal insufficiency' (otherwise called 'Addison's Disease,' which President John Kennedy had) do exist and for which there are medical tests to evaluate function, 'adrenal fatigue' is a supermarket checkout aisle disorder without any lab values or tests. As such, the symptoms can be anything:  fatigue, thirst, tiredness, and a whole host of vague symptoms which can equally easily be attributed to lack of sleep, anxiety, or depression.  As such, it is a perfect fake disorder for fleecing a gullible segment desperate for explanations for their sense of being somehow unwell.

Please elaborate about when your symptoms started and what factors might have been associated with their development.

[notahypochondriac81]

Thanks, I'm not familiar. I do know squatting in the grocery store gives me trouble. I have to use the cart to stand up and then hold onto till I gain composure. You would think I was a 300lb 80 year old.

[notahypochondriac81]

I have been pinging off symptoms like a shorted out airplane panel for 4 years, I don't doubt that I am a very confusing frustrating case, I guess I am also growing a little impatient. But if they don't have an medical reason could they explain what avenue to explore. I am not aware of what it could be a sign of and I wouldn't have the first clue what tests to request. Guess I was hoping to be more than a chart.

[Whatnow714]

Just a thought-I was diagnosed with POTS recently after many years of symptoms.  Does your heart rate increase by at least 30 beats a minute when you stand?  Do you have digestive issues?  Headaches?  Fatigue?  There are so many symptoms.  I know lifting arms, bending, stooping, warm showers, standing, stress all increase symptoms.  I also have legs issues.

Just a thought-good luck.

[Ger57]

afaik a lot of people have or have had CEBV (95% of US adults). It can also cause fatigue.
By all the tests you have gone through, I guess there is not very much reason to assume that something is missed that is suddenly gonna take you away from your kids. Try to relax and discuss your problems and worries with your GP. He/she should know if and which next step has to be taken.
I wish you and your family a healthy 2015!