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Many Doctors and Tests - no answers

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Old 02-13-2010, 01:23 AM   #1
Join Date: Feb 2010
Posts: 2
Bethnini HB User
Many Doctors and Tests - no answers

I started feeling ill about 8 months ago - the first and continuing symptoms are pretty intense gastro-intestinal pain, gas, bloating, flatulence, pressure and several loose stools a day - now I have a very distended stomach and look 5-6 months pregnant. Soon after I had a lot of sinus problems and congestion. Next was tingling and numbness in my hand and arm -- onward through extremely low blood pressure (which I never had before) and to the point of fainting a few times -next, small raised bumps in my mouth that started in the front inner lip but have spread to my whole mouth - now the area from under my jaw down my neck is very tender and painful and throughout all this - extreme fatigue and dehydration. Gone to Gatrointerologists, Internists, Allergy Doctors, ENTs, Neurologist and the answers I get are I have IBS, nasal allergies and neuropathy of my elbow. The symptoms go on and are getting worse. I've had all kinds of tests and could swear I have parasites but those tests keep coming back negative. I've had MRIs,CT scans, endoscopy, colonoscopy, ultrsound, many blood tests, EMG nerve tests and had my adrenal tested.Has anyone else had this combination of symptoms or something similar and been able to get an accurate diagnosis and help? Thanks.

Last edited by Bethnini; 02-13-2010 at 01:24 AM.

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Old 03-07-2010, 09:07 PM   #2
Join Date: Mar 2010
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Candice71 HB User
Re: Many Doctors and Tests - no answers

ask them to test you for AIP stands for accute intermittent Popharyia<sounds like po-fa-ria Thats what happened to me.

Old 03-17-2010, 09:58 AM   #3
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harka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB User
Re: Many Doctors and Tests - no answers

Your symptoms are unfortunately very non-specific and don't point towards any single diagnosis. The fact that you've had such extensive and specific testing without a diagnosis means that unfortunately a cause will be very difficult to find, and even if it is, the underlying condition will be due to more than just one thing.

Porphyria is not a bad thought--there are many different types, but the only real manifestation of it is abdominal pain and sometimes sun sensitivity.

Are you currently pregnant? Did most of these symptoms start when you were pregnant?

Last edited by harka; 03-17-2010 at 09:59 AM.

Old 04-26-2010, 02:35 PM   #4
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Location: Houston, TX, USA
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katyhilton HB User
Re: Many Doctors and Tests - no answers

Post is kinda old... I hope you have it figured out yet. If not... Did anyone suggest celiac disease? One of my children have it so I have read a lot about it. Apparently it can strike at any age and the symptoms vary from person to person. From what I understand - most people get sore belly, bloated belly, chronic loose stools. My baby developed it at age 2. Over night he looked pregnant, was very fussy, lost his interest in eating and was pooing like a newborn.

He showed great improvement after I removed gluten from his diet 100%... but it took several weeks for it to completely go away. You have to wait for the intestines to heal up. The protein in gluten destroys the lining of the intestines. I believe it boils down to... his body just decided it was incapable of digesting Gluten. There is no cure. It is hard to diagnose - They have to do a biopsy of your colon. They have to knock you out. There are some other tests but they are not 100%. The easiest way to figure it out is to eliminate gluten for awhile and see if it gets better. Eliminating gluten is really hard at first. And if you have it bad, you can't even ingest trace amounts of it without getting sick. I have read nightmare stories of people who went years and years before figuring it out.

Last edited by moderator2; 04-14-2011 at 04:21 PM. Reason: please do not copy from websites

Old 04-14-2011, 03:54 PM   #5
Join Date: Mar 2011
Location: St John's, antigua
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janetbento HB User
Re: Many Doctors and Tests - no answers

Have you had a Celiac Test done? Do the stool gene test done, the other two (blood and biopsy) and can be negative when in fact it's not. My son tested positive through the gene test. After many years of not knowing what was wrong and a lot of suffering on his part we are finally dealing with something. Basically you can never eat gluten again. It's tough but doable!

Last edited by moderator2; 04-14-2011 at 04:21 PM. Reason: please do not post a commercial website

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