So I Am Confused

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Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 2/12/2012 12:09 AM (GMT -6)   
Hello. My name is Adam. I am 21 years old. I have been sick for a year now. I finally diagnosed with Colitis and what my gastroenterologist called "non-specific Crohn's Disease." However there are all kinds of other symptoms going on too that my doctors say aren't symptoms of Crohn's or Colitis. Heart palpitations, and I have low grade fevers a lot, constant over-sweating, weird swirling lights in my vision, migraines, muscle pain, neck pain, anxiety, depression, panic attacks and fatigue, along with weird vibrating feelings in my feet, arms and legs. I got my eyes checked, and got an EKG, everything checked out fine with my eyes and EKG. I read a lot of literature about Lupus and a lot of the things I have read are soooooo similar to me since I have gotten sick. Down to the symptoms, and even down to some experiences people have had before they even knew they had the illness.

I have gotten my blood tested for Lupus twice and everything is fine apparently...I am not really sure how the blood tests work. I saw a rheumatologist once, and once only because he basically laughed me out of his office and told me nothing was wrong with me, even though he noticed odd rashes on my face. He told me he would biopsy the rashes and never ended up doing it either. My mother was diagnosed with Sjogrens Syndrome as well as Lupus, so that made me even more driven to get tests done but my doctors keep saying everything is fine. I just don't get it. Because I can tell how not fine I am. Some days I can barely function.

What do you think about this? Or think I should do?

Post Edited (Adam DoubleYoo) : 2/11/2012 11:56:27 PM (GMT-7)


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/12/2012 1:25 AM (GMT -6)   
Try going to a Rhem ok, ya'll spell the word I cant LOL
 
Rhemy = Rhem....  
 
 
Thanks Joy, I know you are gonna finish the word ****
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 2/12/2012 1:54 AM (GMT -6)   
well, something I forgot to mention, he told me there was nothing rheumatologically wrong with me. and basically laughed me out of his office.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/12/2012 1:08 PM (GMT -6)   
Adam,
 
You do have something autoimmune (also runs in your family) going on and it is possible that lupus or something else is lurking.  Diagnosis of lupus is not precise and is done with clinical symptoms and labs. 
 
I would find another rheumy and write our your medical history and symptoms as briefly as possible.  Also have a list of med and another list of your questions.  The rheumy you went to sounds like a quack.  If a doctor laughed at me I would not stand for it.
 
Your problem might not be AI at all but since you already have one AI problem it is not unlikely that you have another. 
 
Good luck at finding out what is going on.  If you are stressing out over your situation you might want to talk to your primary care doctor about antidepressant meds.
 
Some of the symptoms you stated are more neurological...have you seen a neurologist?
 
Bill

Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 2/12/2012 1:24 PM (GMT -6)   
I see a neurologist for my chronic migraines and headaches, and i've had an MRI done and he said the MRI looked good. and thanks, yeah I was very angry with the doctor. he didn't even follow through with some of the stuff he said he was going to do, like the biopsy.

yeah I take an anti-depressant, as well as anxiety meds. I take quite a few meds...I take .5mg of Klonopin before I go to sleep because sleep is almost impossible for me, 10mg of Lexapro daily, two 500mg capsules of Pentasa every six hours, Omeprazole as needed, two 80mg capsules of Propranolol for my migraines and it also helps for hypertension, Sumatriptan as needed, and Naproxen, but because of the Colitis and Crohn's I only take it if the migraine is so bad the Sumatriptan doesn't touch is, which is rare, I think I've had the bottle for months and have used two pills.

Post Edited (Adam DoubleYoo) : 2/12/2012 11:29:33 AM (GMT-7)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/12/2012 2:20 PM (GMT -6)   
All I can suggest is that diagnosing complicated disease(s) is difficult for a doctor in private practice.  Not sure where you live but large teaching hospitals like Mayos, Northwestern and Cleveland Clinic offer a better chance to get a diagnosis.  You will start with one specialist but he will bring in others as the diagnosis requires.
 
Good luck and sorry you are having these problems at such a young age.
 
Bill

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/12/2012 3:36 PM (GMT -6)   
@Smurfy-Bill spelled it before me. :)

@Adam-I remember you having so much trouble a few months ago. I'm glad you found some answers you've been searching for, but I'd find another rheumy like Bill suggested.
Joy
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