M
mrs. vr
Guest
Hi, I hope it's ok to post here, because technically, I'm waiting to have my diagnosis confirmed, but maybe you can offer some insight for me. I am a 37 year old mother of three, and about nine years ago, I started having joint pains. At the time, I was running a fair amount, and since the initial pains were in my knees, I was told that my kneecaps just weren't tracking well, and sent for physical therapy.
The pain continued on/off for several years, and migrated to other joints (shoulders, elbows, wrists, occasionally feet) and I started getting cortisone shots when it would get to the point where I couldn't move the joint.
FINALLY a couple years ago, I found a new orthopedist who sent me for some blood work. My SED rate and C-reactive protien were both elevated, so he sent me to a rheumatologist. He just looked at my knees (they weren't hurting at that time) and said there was some minor degeneration, but nothing to write home about, and sent me on my way. About six months later, I needed another cortisone shot, ortho sent me for labs, inflammatory markers were elevated, and I went to another rheumatologist who told me i was too fat (I was a size 8/10 US at the time) and that I had hypermobile joints and never to do any exercise other than swimming and lose weight. Oh, and he also kept saying the inflammatory markers weren't important because we didn't know where I was in my "cycle" (Im on the pill, and know EXACTLY where I am, but he wasn't listening)
In the meantime, I have suffered hair loss, had recurring ulcers in my mouth, and eye inflammation. When my eyes would turn red, I'd call my primary doc, and he'd just say, oh it's probably viral conjunctivitis, just wait it out.
ANYWAY, fast forward to a few months ago, I had another bout of the eye inflammation and happened to be going to my primary that day for a flu shot. He actually SAW it this time, and sent me immediately to the eye doctor who diagnosed me with episclertitis and said it looked like a Lupus related rash. (I've been tested several times for Lupus, with negative results). A blood test at that time showed a SED rate of 51 and a C reactive protien of 26.6.
About the same time, my husband was visiting a new rheumatologist, who is known for being very aggressive about finding out what's wrong with people, and I mentioned all this to him, and he told me to make an appt. with him.
During my first exam with him, he started asking me about my bowel habits. I thought he was nuts until I started thinking and realized, I was going a LOT, maybe 7 or more times a day, and it was never, for lack of a better word, formed. Most of the time, it's not really crampy, painful, so I didn't even really think of it as diarrhea until he started asking me. I also in retrospect remembered a couple of very painful episodes that would come on after eating, but at the time, I thought they were stomach bugs.
He did MORE blood work, and while I was waiting for results, I started a period of rectal bleeding. I have hemmorhoids from childbearing, and have bled on and off for years, but this was a not insignificant amount of blood, so he sent me to a GI doc for a colonoscopy.
The colonoscopy was, to my surprise, totally clear, but when I went back to my follow up appt with the rheum, it turned out that I had tested positive for the ASCA IgG antibody.
That, in conjunction with the symptoms I've had made my rheum feel very strongly that it was Crohn's we're dealing with.
Yesterday I had a small bowel follow through, and tomorrow I'm having an upper endoscopy, then I have to do the video capsule.
Oh, I forgot, I've also had reflux for many years, so in a way, I'm glad they're doing the upper endoscopy, as i've always been a little worried about my esophagus.
I know I'll have a more definitive answer soon, and hopefully some treatment that will help with my symptoms (my knees are flaring up this week, after a high fever this past weekend), but I guess I'm wondering if it's possible to have more extraintestinal symptoms than intestinal and still have crohn's.
I certainly don't want to have Crohn's, but at this point, it would just be nice to know I'm not totally nuts.
If you made it this far, I really appreciate it. I'm not sure even *I* could read that much about myself!:eek2:
Thanks for listening.
Sharon
The pain continued on/off for several years, and migrated to other joints (shoulders, elbows, wrists, occasionally feet) and I started getting cortisone shots when it would get to the point where I couldn't move the joint.
FINALLY a couple years ago, I found a new orthopedist who sent me for some blood work. My SED rate and C-reactive protien were both elevated, so he sent me to a rheumatologist. He just looked at my knees (they weren't hurting at that time) and said there was some minor degeneration, but nothing to write home about, and sent me on my way. About six months later, I needed another cortisone shot, ortho sent me for labs, inflammatory markers were elevated, and I went to another rheumatologist who told me i was too fat (I was a size 8/10 US at the time) and that I had hypermobile joints and never to do any exercise other than swimming and lose weight. Oh, and he also kept saying the inflammatory markers weren't important because we didn't know where I was in my "cycle" (Im on the pill, and know EXACTLY where I am, but he wasn't listening)
In the meantime, I have suffered hair loss, had recurring ulcers in my mouth, and eye inflammation. When my eyes would turn red, I'd call my primary doc, and he'd just say, oh it's probably viral conjunctivitis, just wait it out.
ANYWAY, fast forward to a few months ago, I had another bout of the eye inflammation and happened to be going to my primary that day for a flu shot. He actually SAW it this time, and sent me immediately to the eye doctor who diagnosed me with episclertitis and said it looked like a Lupus related rash. (I've been tested several times for Lupus, with negative results). A blood test at that time showed a SED rate of 51 and a C reactive protien of 26.6.
About the same time, my husband was visiting a new rheumatologist, who is known for being very aggressive about finding out what's wrong with people, and I mentioned all this to him, and he told me to make an appt. with him.
During my first exam with him, he started asking me about my bowel habits. I thought he was nuts until I started thinking and realized, I was going a LOT, maybe 7 or more times a day, and it was never, for lack of a better word, formed. Most of the time, it's not really crampy, painful, so I didn't even really think of it as diarrhea until he started asking me. I also in retrospect remembered a couple of very painful episodes that would come on after eating, but at the time, I thought they were stomach bugs.
He did MORE blood work, and while I was waiting for results, I started a period of rectal bleeding. I have hemmorhoids from childbearing, and have bled on and off for years, but this was a not insignificant amount of blood, so he sent me to a GI doc for a colonoscopy.
The colonoscopy was, to my surprise, totally clear, but when I went back to my follow up appt with the rheum, it turned out that I had tested positive for the ASCA IgG antibody.
That, in conjunction with the symptoms I've had made my rheum feel very strongly that it was Crohn's we're dealing with.
Yesterday I had a small bowel follow through, and tomorrow I'm having an upper endoscopy, then I have to do the video capsule.
Oh, I forgot, I've also had reflux for many years, so in a way, I'm glad they're doing the upper endoscopy, as i've always been a little worried about my esophagus.
I know I'll have a more definitive answer soon, and hopefully some treatment that will help with my symptoms (my knees are flaring up this week, after a high fever this past weekend), but I guess I'm wondering if it's possible to have more extraintestinal symptoms than intestinal and still have crohn's.
I certainly don't want to have Crohn's, but at this point, it would just be nice to know I'm not totally nuts.
If you made it this far, I really appreciate it. I'm not sure even *I* could read that much about myself!:eek2:
Thanks for listening.
Sharon