Sphincter of Oddi Dysfunction: What helps you?
<p>I have Sphincter of Oddi Dysfuncfion. It causes severe upper abdominal pain, a lot like a gallbladder attack. I was misdiagnosed for ten years and have still had problems, pain that required medication and the ER every once in a while. The pain has suddenly gotten so much worse. I also struggle with Pseudo Tumor Cerebri which causes massive headaches. I am getting spinal taps every 5 weeks, they do not work on the headaches but we are trying to keep me from going blind from the Sphincter of Oddi.</p>
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GET ON A PLANE AND GO TO MAYO CLINIC IN Rochester Minnesota.
They have a Hepatobiliary And Pancreas Clinic with the best doctors in the world.
I am thinking of going there myself.
Good Luck to you and your daughter. Saying prayers for you.
Is she not eating because she can't? Or is she just so uncomfortable she don't?
They are guessing I have it? I swore it was stones or gall bladder, they say no.
It scared me, I had suddenly had a very sensitive area on my body which is now a whole area. IT IS NOT PAIN!!! For me it is a Severe Extreme Discomfort. I changed my diet immediately from fear. I eat peanuts, Rotisserie chicken, fruits and ( mostly blueberries, grapes,rasberries and pineapple vegetables such as canned mixed, fresh green beans, (baked potato) almost plain now) lots of beans kidney, black and chicken peas. No bread at all. Sometimes egg whites with spinach and tomato. Canned spinach.
That's my diet. I was 116 about 1and half months ago and I'm 102 now. I don't know what to do. I associate eating or walking ( movement) with my discomfort. If I touch it I will jump out of my pants...it's a No Don't touch it!! I'm very afraid I will die. I am left with no real answers and I'm scared. I don't know what to do? Even my clothes touching bothers me.
Again it does not hurt. Discomfort as if my organ is moving around best to descibe??describe???
Someone please ease my kind.
I don't believe in medication especially for a guess??? What di I do? Will I be okay???
Can anyone read my reply to @suere etc. above and give me any answers as well??? I'm at a loss
I found Dr. Nusrat over 4 years ago after suffering for 16 years. He specializes and teaches other doctors about SOD. I hope this message finds you so that you may contact him for help. He is an excellent doctor that immensely changed my life. Salman Nusrat, M.D. Gastroenterology, 3366 NW Expressway Suite 300, Okc, OK 73112, (405) 702-1300.
You are not crazy!!!! I ended up having an ERCP about 7 years ago. There are 3 types of this… to me you would be considered Type 3 like me. I have had labs drawn during and after attacks… that’s what I call them. Nothing is EVER elevated!!! After 7 years… all my symptoms are coming back and I had one of the worst attacks and like you wanted to go to the ER but could not get myself there. I feel your pain… hence the reason I ended up joining this group!