Feeling sicker until daily bowel movements for >year now, heart palpitations

I have seen every specialist there is, but noone seems to have a clue.  All I get is 'IBS' which just seems like the 'easy way out' for my gastro.  I'm hoping someone, anyone can give me some idea because after more than a year of this, I just can't function at all and I'm in constant pain...

Here are my symptoms:

1. 3 years ago noticed stools turned yellow and stayed that way, started having minor abdominal discomfort, also feeling occasionally lightheaded and headache that would pass after a day...

2.  1 year ago I started having severe diarrhea, and a severe throbbing headache all the time, around the clock.  It NEVER goes away, not for one minute in the last year.  I am also extremely lightheaded and movement seems to make it worse.  Just before bowel movements every day I get so sick I become very pale and just writhe in agony.  Also extremely dry throat, numbness and pain in the face along jawline and in ears...I lose 75 lbs. in 4 months.

3.  7 months ago I started having heart palpitations every few minutes, accompanied by horrible head pain as blood seems to rush to my head.  These have gotten better and worse but seem to get worse when the diarrhea gets worse.

4.  5 months ago my eyes started to hurt so bad I now have to keep one eye shut all the time.

Every night I wake up w/ extreme pain in my head (worse than normal) that lasts about a minute.  This seems to happen after sleep and is usually triggered by me slightly moving my head (but not necessarily).  I also get a feeling of paralyzation that lasts a few minutes and seems to come on when I'm in the process of waking up...

I've seen 4 neurologists, 3 gastroenterologists, 3 internal med docs, 2 Ear nose throat docs, and a few other specialists.  All I have gotten from them is 'IBS' which is just a joke at this point.  I've of course done every test known to man, and the only thing they've shown is low Vitamin D (I don't get much sunlight), T3 and T4 are a bit low, and a capsule endoscopy show my digestion to be slow.  To help motility they keep giving me the standard IBS treatments, but how the HELL are anti-spasmodics and muscle relaxors going to help speed digestion?  Not to mention I don't have spasms!!

I have completely lost faith in doctors.  They never seem to hear anything I say, and they seem to be utterly against ever doing any test either more than one time, or doing them in a timely fashion (you know when the symptoms are really bad).

I am going to the Mayo in Florida in a few weeks (I set the appt myself cuz my docs are useless).  I don't have much faith they'll figure anything out (they'll probably give up and yell 'IBS' like the rest), but it's my only remaining option...cept you guys ;).

PLEASE HELP ME!!!!

Thanks Leslie. Hope you're feeling better, too. I don't what kind of problems you're having exactly but can if it's abdominal can I suggest a special kind of probiotic called Florastor? My doctor recommended it and you can only order it through the pharmacy (12 pills is usually enough). Half of the organisms in your gut are yeast, so other probiotics totally neglect them - Florastor is a YEAST not a bacteria. I've found that it doesn't upset my gut like the others and is the only thing that slows things down. It is especially useful if you've ever had a yeast infection and had to take something to kill it, cuz that may kill the intestinal yeast as well which really messes things up.

Perhaps a Mayo visit could be in the works for you too? Depending on your insurance, you may or may not need a referral, though most doctors will give you one no problem. You just have to have seen all the specialists already with no satisfactory diagnosis (IBS is a huge bunch of B.S. that doctors like to use to avoid dealing with a hard case IMNSHO).

I have one new diagnoses today, though. My gastro found that I have iron deficiency anemia, so I'm going to do another colonoscopy to check that whole area again. :( :( :(

Mayo is in Montana and Florida. I hope if things don't work out you consider them. I just know I have to try even if it means an excruciating 12 hour drive, cuz noone else is going to get to the root of the problem!

Thanks for your well wishes, the very best back at you!

chrisbord - Hello, I thought I should share something with you. My sister in law has been recently diagnosed with POTS. Postural Orthostatic Tachycardia Syndrome. Please have a look at this site; maybe this has been ruled out, thought it might be worth mentioning. This is an imbalance of ANS and has been associated with digestive issues.
http://www.potsplace.com/
Hope this helps!

chrisbord, I can not believe that u r havng what I have , also my eyes start 7 months go to hurt soo bad , I also have joint pain, I have seen many doctors , and all what I get is IBS.I flew 21 hours to the US, to Mayo clinic and got same answer IBS ,I will write my whole story when get home

Post Edited (UAE 35) : 7/16/2009 2:28:25 PM (GMT-6)