Extremely sick for over a year now and no diagnosis.

For one full year (though 'coming on' for a few years before that), I've been continuously extremely sick.  I can barely function at all (even walking ten feet is nearly impossible), and I've seen lots of specialists (gastro-, endocrin-, neuro-) and had lots of tests (gastric emptying, colonoscopy, endoscopy, gall bladder, blood, stool, even a SPINAL TAP!).  No diagnosis except Diabetes Type 2 (easily controlled w/o drugs), and useless stuff like IBS and Insulin Resistance Syndrom (syndrome).  NO medication has helped me or dulled any symptoms.  I have eaten very healthy (lots of fiber and probiotics) for a year now with no discernable allergy or pattern...

1)  Extremely sick all the time, especially in the morning and just before a bowel movement.

2) Initially one year ago had severe diarrhea for a months, and for a few years have had very light yellow stool, very loose.

2)  Constant Pain in center of abdomen and just above belly button.  When this is worse I feel sicker and even more lightheaded.

3)  Constant pounding headach that moves around but seems pretty generalized most of the time.  Neurologist at a loss to diagnose or treat.  Also extremely lightheaded, usually the pain is so bad I'll pass out multple times a day.

4) Have had cold sores once a year since a child, but a few years ago started having them every few months, then just before I got so sick a year ago they seemed to simply stop appearing.  Is my herpes moving??  I know this is rare but w/ undiagnosed diabetes for a long time messing up my immune system isn't it possible?

[Kevin Pho, MD]

Since is the GI forum, I will address the questions related to the abdominal symptoms only.  

You have been to multiple specialists, so it's unlikely that I can come up with something new over the internet without examining you.

That said, there are some specialized tests that you may want to discuss with your GI consultant.

A negative colonoscopy would exclude possible masses or inflammation in the colon.  I would send the stool of to look for malabsorption, as well as blood tests to evaluate for celiac disease.

Otherwise, I would consider imaging the abdomen with a CT scan.  

If the tests remain negative, optimizing treatment for irritable bowel syndrome can be done, including possible antispasmodic agents, tricyclic antidepressants, or probiotic therapy.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin Pho, M.D.

KevinMD.com
Twitter.com/kevinmd

[ChrisBordeman]

Sorry, on #3 I misstated that.  I should have said that most days I NEARLY pass out several times a day.  To elaborate, I feel very lightheaded all the time, and have these frequent sudden 'attacks' where my head will start pounding for about 30 seconds.

Curiously, a major trigger seems to be when I urinate (always sitting down because too weak) then I stand up and walk a few steps.  They also happen when I'm sitting a few times daily or I get up and try to walk around but those are less severe and happen randomly.  The urination seems to be a fairly reliable trigger, as well as when I change head positions from laying to sitting.  Walking is less reliable trigger, sitting less than that, and when things really get horrible they can even happen in my sleep, at which point I wake up.

They also usually happen first thing in the morning when I first wake up, or if I sit still for a long time and suddenly change position or bend over.

Also, after I have an attack I feel weak but I usually won't have another one for a few minutes so I usually try to get things done during that time.

The attacks seem to be directly related the the abdominal problems, and get extremely severe when I have the diarrhea.

[ChrisBordeman]

Also, I should mention I saw an ENT, did a balance test and confirmed it's not inner ear related.

[Matthew007]

have you tested for celiac disease?  Have you totally gone off lactose for a good month?  Maybe go visit an allergist just to check and see if you're now allergic to something...

sounds like you're having a spasm for some reason.  Could be chron's too I guess...the've given me the IBS routine as well, and I just found lactose the major offender.  No real test for it other than a hydrogen breath test.  Could be SIBO..I dunno.. I'd go on a super bland diet of no lactose low fat, and maybe a stool test..test for c. difficile.. I dunno that's a hard one :S

good luck i'm chronically sick as well.

[ChrisBordeman]

Thanks for your response, Matthew.  I have been tested for lots of allergies, done lots of biopsies, never found anything.  Tried going off milk (lactose?) for a few months w/ no improvement.  Same for wheat, though tests say I'm not allergic.  It could have been some other allergy but I've varied my diet often and nothing seems to help.

I was already tested for Chron's etc, have had several endoscopies and an colonoscopy.

Today, however, I have made an appointment to do one of those 5-day diagnostics at the Mayo Clinic in Florida (904-953-2272, they have multiple locations).  Mayo is one of the best (if not the best) diagnostic hospitals in the world.  Essentially you just call them up and make an appointment.  Then you fly in, and for 5 days lots of awesome doctors do every imaginable test and find your problem.  The basic requirement is that you have already seen a gastroenterologist, an endocrinologist, maybe an ear nose throat doc, and a few other relevant specialists, who have failed to diagnose anything.

I suggest you try the same.  If that doesn't help, I'm really out of options.

[Matthew007]

Ha thanks, if I had the money or insurance (which I don't) i'd be all over that idea.  Well I hope they do figure you out.. it's maddening being sick chronically isn't it? .. I think mine has been caused by a lactose intolerance for a few years (without knowing it) and it's caused major anxiety/spastic colon conditions for me so i'm trying everything I can the no-insurance route..going back to the doctor on monday to try some anti-anxiety meds.

but good luck to you on your visit with the mayo clinic!  I'm very jealous :)