Losing Hope - Undiagnosed for 15 years - symptoms worsening

[Jen112488]

Hi, I wanted to see if anyone had any advice for me.  I have puzzled Dr's and am not sure where to go.  If anyone has any advice let me know!

Since I was 6 years old, I have had many symptoms that are unexplainable.  The main one is chronic nausea.  It went away for a few years, but came back extremely strong when I was about 17.  Since then, it was worsened and I become completely useless at least once a day.  Zofran is the only thing that seems to work, but it slowly not working as well as it used to.  I have to take around 8-12 mg for it to even have any effect. At first, I only got the symptoms at night, causing me to not be able to sleep.  Now, it happens any time of the day.  I have had every test possible and nothing is really found.  I have had weird blood tests, but nothing that can be connected.  My sister and I had similar symptoms growing up, and she was recently diagnosed with Lupus.  I've been told it's a developing auto immune disease which might eventually show, but nothing has and my symptoms are getting worse. It's so bad that it is truely affecting my life.  Other symptoms include a regular low grade fever, muscle aches, swelling limbs, sensitive skin, and i'm constantly getting sick.  

Let me know if any one has had anything similar - what tests to get done, any dr recommendations, anything that can lessen the burden of all of this.  

[Dr. Kokil Mathur]

Hi
Crohn’s disease is a difficult entity to diagnose. Skin disorders too commonly are seen with Crohn’s as also arthritis. An upper GI series using barium dye is done to see the condition of small intestines. The degree of involvement of the large and small intestine may vary from person to person.  A biopsy is the most confirmatory.
An elevated ESR does confirm inflammation in the body. Low protein, minerals and iron in blood are the other findings in Crohn’s which may or may not be present. A recent advancement in Crohn’s diagnosis is video capsule endoscopy.
I would strongly recommend you take a second opinion from a gastroenterologist. It is difficult to comment beyond this at this stage.  Please let me know if there is any thing else and do keep me posted. Take care!

[Jen112488]

Thanks for responding.  Dr's have considered that I might have Crohn's but have failed to find it.  I have had a colonoscopy, an upper GI endoscopy as well as numerous xrays and
.  My blood tests have shown that I have a very high ESR (sedimentary rate), low igA, and other factors that would lead them to believe that it is an autoimmune disorder.  I also have the lacy rash ( I can't remember the specific name for this) in my skin, showing that it could be a connective tissue disorder.  Does any of this change anything?

[Dr. Kokil Mathur]

Hi
Welcome to the forum!
The symptoms of chronic nausea, low grade fever, muscle aches, swelling limbs, and sensitive skin are seen in Crohn’s disease. This is an autoimmune disorder primarily affecting the gut. Colonoscopy, blood tests and MRI may help in diagnosis.
It is difficult to comment beyond this at this stage. I would strongly recommend you to see a gastroenterologist (a specialist who looks after the diseases of our digestive system).
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!