Age 40 with atypical presentation of Crohn's.
Guess my guts never read the medical text on how they were supposed to act.
I had very bad bouts of numbness and tingling in my arms and legs. Sometimes my entire arm would fall asleep at night...couldn't hold a position either standing, sitting or laying down more than a couple of minutes without something falling asleep.
I go to family doc and complain not only about the nerve issues but about joint pain. Family doc tells me I'm only allowed one complaint at a time, because they can't/don't want to spend more than 10 minutes and does some bloodwork finds elevated sed rate and anemia, blows that off and tells me she thinks it's carpal tunnel (yeah but I don't type with my feet). Thanks me for giving me money to hear this nonsense and sends me on my way.
Second opinion internist does billion dollars worth of bloodwork thinks it might be lupus and sends me to...
Rheumatologist who says not lupus and can't find anything wrong with my joints. Tells me the super elevated SED rate must be due to aspirin or something I took (no, I wasn't taking any aspirin or any over the counter anything at all for months before that blood tests, and I tell him that), doc blows of SED rate (tells me I must have taken something over the counter and not remembered it )there is nothing he can find wrong with me, but if I really want to press the issue I should see a neurologist at my leisure since nothing indicates that anything is wrong with me..it's probably just a pinched nerve in my neck sezs he.
One year later...
Neurologist #1 down the street orders super expensive MRI thinks it might be M.S. and has an office staff that was rude, the whole practice gave me a hinky feeling so ...
Teaching University Neurologist #2 tells me to list out every complaint I have...first time a doc has asked me to do this spends almost an hour examining me and asking questions, feels abdomen (and no joke up to this point no one gave me a general physical, it was all blood tests and MRI) feels a tender spot in my belly and says, "How long have you had this?"
"Uhhh..had what?"
"The big mass in your belly"
Priceless.
$10,000 worth of MRI's and thousands of dollars in blood tests but this guy does a physical and finds the problem right away.
CT scan shows tumor, off to a cancer doc I go, they are talking surgery after the colonoscopy and telling me to get myself ready mentally for cancer treatment but pathology eventually comes back with Crohn's.
I imagine I'm not the only one who looks back and tries to figure out when the very first symptoms started. Like I said, I'm forty, but I remember being about 12 and having a bout of massive cramping after eating...lots of constipation. In my 20s I had more problems with constipation and a very nasty fissure as a result that took 6 months to heal. The gastro also said that the scopes show years and years of damage.
I still don't have a lot of problems with the big D. I have so much fatigue that I'm convinced I'm going to go into hibernation any day now. Hips still hurt too much to hike, walk, or run around town and do errands even on the days when I'm not fatigued. I've been severely fatigued for a couple of years and when I complained to friends and family they told me I was just getting old and deal with, exercise more, quit being lazy, etc.
Told you I was sick.
Guess my guts never read the medical text on how they were supposed to act.
I had very bad bouts of numbness and tingling in my arms and legs. Sometimes my entire arm would fall asleep at night...couldn't hold a position either standing, sitting or laying down more than a couple of minutes without something falling asleep.
I go to family doc and complain not only about the nerve issues but about joint pain. Family doc tells me I'm only allowed one complaint at a time, because they can't/don't want to spend more than 10 minutes and does some bloodwork finds elevated sed rate and anemia, blows that off and tells me she thinks it's carpal tunnel (yeah but I don't type with my feet). Thanks me for giving me money to hear this nonsense and sends me on my way.
Second opinion internist does billion dollars worth of bloodwork thinks it might be lupus and sends me to...
Rheumatologist who says not lupus and can't find anything wrong with my joints. Tells me the super elevated SED rate must be due to aspirin or something I took (no, I wasn't taking any aspirin or any over the counter anything at all for months before that blood tests, and I tell him that), doc blows of SED rate (tells me I must have taken something over the counter and not remembered it )there is nothing he can find wrong with me, but if I really want to press the issue I should see a neurologist at my leisure since nothing indicates that anything is wrong with me..it's probably just a pinched nerve in my neck sezs he.
One year later...
Neurologist #1 down the street orders super expensive MRI thinks it might be M.S. and has an office staff that was rude, the whole practice gave me a hinky feeling so ...
Teaching University Neurologist #2 tells me to list out every complaint I have...first time a doc has asked me to do this spends almost an hour examining me and asking questions, feels abdomen (and no joke up to this point no one gave me a general physical, it was all blood tests and MRI) feels a tender spot in my belly and says, "How long have you had this?"
"Uhhh..had what?"
"The big mass in your belly"
Priceless.
$10,000 worth of MRI's and thousands of dollars in blood tests but this guy does a physical and finds the problem right away.
CT scan shows tumor, off to a cancer doc I go, they are talking surgery after the colonoscopy and telling me to get myself ready mentally for cancer treatment but pathology eventually comes back with Crohn's.
I imagine I'm not the only one who looks back and tries to figure out when the very first symptoms started. Like I said, I'm forty, but I remember being about 12 and having a bout of massive cramping after eating...lots of constipation. In my 20s I had more problems with constipation and a very nasty fissure as a result that took 6 months to heal. The gastro also said that the scopes show years and years of damage.
I still don't have a lot of problems with the big D. I have so much fatigue that I'm convinced I'm going to go into hibernation any day now. Hips still hurt too much to hike, walk, or run around town and do errands even on the days when I'm not fatigued. I've been severely fatigued for a couple of years and when I complained to friends and family they told me I was just getting old and deal with, exercise more, quit being lazy, etc.
Told you I was sick.
