I think that I finally figured this out. Here is my story. I know it is long, but I really need some advice. I'd like to know if anyone else out there has similar symptoms. Here goes.
So, it all started in 2007. I started having lots of abdominal cramping and very loose stools. Sometimes I even had blood in them. The bleeding stopped, so I did nothing about it and just figured I had IBS. I have had similar episodes since I was a teenager related to what I always thought was lactose intolerence.
I got pregnant in 2008 and had bad diarrhea throughtout the whole pregnancy. My OB said it was probably from the pregnancy. I had my daughter in September and a week after she was born I started having excruciating burning pain in my back with lots of N/V/D. They just said it was a stomach bug, but the burning pain never went away. I dealt with it for a few months and finally when I went for my yearly GYN check up my Dr examined me, checked my thyroid and it was inlarged. I reported to him about the terrible burning that I was experiencing in my back, the numbness and painful tingling that I was having in my hands and feet and he referred me to a Surgeon, Endocrinologist, and Neurologist.
The surgeon wanted to remove my thyroid, the Endocrinologist said that my thyroid was normal, and the Neurologist thought that I had MS. He did an MRI that came back normal so he told me I was crazy and should see a Psychiatrist. That really hurt.
I then moved to another city and within 3 months of being in a new town a new symptom arose. I got Iritis!!! It took 3 months of steroid therapy to get rid of it and the glaucoma that came from the steroid treatment. The opthamologist ordered some lab work and I found out I am HLA-B27 positive. He referred me to my GP who did more lab work and referred me to a rheumatologist. The lab work my GP did came back showing that I was very deficient in vitamin D. My level was 13. I started taking over the counter vitamin D and have not had my levels rechecked and that was about a year ago.
The rheumatologist suspected AS because of the back pain, iritis and the hip pain that started a few months after the iritis. My insurance made me switch rheumatologist and I had to start all over again. The infammatory lab results that he did always came back normal, but the pain just kept getting worse. I started getting sores in my mouth, all down my throat that lasted for weeks to months and red spots on my legs and bruise looking spots on my torso that don't go away so he started me on NSAIDS and Lyrica diagnosing me with fybromyalgia and suspecting Bechet's.
He then moved so I was left with no doctor. I had a very bad flare in December of last year that put me in the ER. They treated the pain and sent me on my way. I was trying to make it through the holiday season, but I was in such severe pain everyday and ended up being so constipated that for the next 3 months I only had 3 real BM's.
My GP sent me back to the first rheumatologist and got me a GI appointment and told me to take miralax daily to keep me moving and put me on a steroid treatment that improved my pain.
The rheumatologist then started me on Humira without an official diagnosis. I started it March 2013, 40mg once every 2 weeks. I am just now starting to feel better.
I saw the GI a few weeks ago and she is suspecting Crohn's. She ordered the prometheus labs that came back indicating that I did not have IBD. I did however have the gene mutation that is indicative of Crohn's. I had my colonoscopy on Tuesday where she found nodular areas in the ileum that she biopsied and possible ulcerative spot in my rectum that was also biopsied. All the results came back normal.
I still don't have a diagnosis. I am running out of steam! I don't understand how they can be treating me with Humira and still not know what to call this. All I know is that I am starting to feel better. The musculoskeletal pain is mostly gone although the burning still remains off and on. I need advice!!!
So, it all started in 2007. I started having lots of abdominal cramping and very loose stools. Sometimes I even had blood in them. The bleeding stopped, so I did nothing about it and just figured I had IBS. I have had similar episodes since I was a teenager related to what I always thought was lactose intolerence.
I got pregnant in 2008 and had bad diarrhea throughtout the whole pregnancy. My OB said it was probably from the pregnancy. I had my daughter in September and a week after she was born I started having excruciating burning pain in my back with lots of N/V/D. They just said it was a stomach bug, but the burning pain never went away. I dealt with it for a few months and finally when I went for my yearly GYN check up my Dr examined me, checked my thyroid and it was inlarged. I reported to him about the terrible burning that I was experiencing in my back, the numbness and painful tingling that I was having in my hands and feet and he referred me to a Surgeon, Endocrinologist, and Neurologist.
The surgeon wanted to remove my thyroid, the Endocrinologist said that my thyroid was normal, and the Neurologist thought that I had MS. He did an MRI that came back normal so he told me I was crazy and should see a Psychiatrist. That really hurt.
I then moved to another city and within 3 months of being in a new town a new symptom arose. I got Iritis!!! It took 3 months of steroid therapy to get rid of it and the glaucoma that came from the steroid treatment. The opthamologist ordered some lab work and I found out I am HLA-B27 positive. He referred me to my GP who did more lab work and referred me to a rheumatologist. The lab work my GP did came back showing that I was very deficient in vitamin D. My level was 13. I started taking over the counter vitamin D and have not had my levels rechecked and that was about a year ago.
The rheumatologist suspected AS because of the back pain, iritis and the hip pain that started a few months after the iritis. My insurance made me switch rheumatologist and I had to start all over again. The infammatory lab results that he did always came back normal, but the pain just kept getting worse. I started getting sores in my mouth, all down my throat that lasted for weeks to months and red spots on my legs and bruise looking spots on my torso that don't go away so he started me on NSAIDS and Lyrica diagnosing me with fybromyalgia and suspecting Bechet's.
He then moved so I was left with no doctor. I had a very bad flare in December of last year that put me in the ER. They treated the pain and sent me on my way. I was trying to make it through the holiday season, but I was in such severe pain everyday and ended up being so constipated that for the next 3 months I only had 3 real BM's.
My GP sent me back to the first rheumatologist and got me a GI appointment and told me to take miralax daily to keep me moving and put me on a steroid treatment that improved my pain.
The rheumatologist then started me on Humira without an official diagnosis. I started it March 2013, 40mg once every 2 weeks. I am just now starting to feel better.
I saw the GI a few weeks ago and she is suspecting Crohn's. She ordered the prometheus labs that came back indicating that I did not have IBD. I did however have the gene mutation that is indicative of Crohn's. I had my colonoscopy on Tuesday where she found nodular areas in the ileum that she biopsied and possible ulcerative spot in my rectum that was also biopsied. All the results came back normal.
I still don't have a diagnosis. I am running out of steam! I don't understand how they can be treating me with Humira and still not know what to call this. All I know is that I am starting to feel better. The musculoskeletal pain is mostly gone although the burning still remains off and on. I need advice!!!
