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Doctor can't figure it out

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Crohn's Disease
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Posted 12/10/2013 1:58 AM (GMT 0)
So I feel worse and worse but I manage it. I'm use to not feeling well and I know how to make it through the day, at least for now. But the doctor still can't figure out why I get joint pain, fevers, muscle pain, swelling, rashes, and fatigue. Another colonoscopy coming up and depending on what the results say he may want to send me to a specialist. My Gi said this. So who is a specialist that you would see after seeing your specialist? I already have a rheumatologist and I have another appointment in a couple weeks.
Posted 12/10/2013 2:05 AM (GMT 0)
Why not try a new GI doctor?
Posted 12/10/2013 2:10 AM (GMT 0)
I've thought about it. Same with my rheumatologist. But I feel like I'd be starting over. They just can't find anything to make me feel better. I not want to go to someone new and be like, ok I've tried humira, remicade, pentasa, apriso, prednisone, now cimiza. Then the rheumatologist has been doing test after test for 2 years and can't figure me out either. My leg broke out in a rash I the office and she says that doesn't make since. I feel like I'd be throwing the last few years out and starting over with new docs. Is that weird?
Posted 12/10/2013 8:53 PM (GMT 0)
Hello What's next?

Sometimes you've to find your problems yourself, since you know your body better than a doctor.

I've been having severe indigestion, slight nausea, sweating, burping, dizziness and so on. I thought, I had an infection in the kidney. Since, I was taking steroids, I though they might have wiped out the good bacteria and resulted in candida. The candida might have somehow entered the kidney and caused infection. But the urine test came out negative. Now I suspect hypochloridia. I've an appointment with my GI next week. The indigestion was horrible last week. I'm taking HCL Betaine and apple cider vinegar. I've got some relief and surprising I could eat and digest a pizza today.

Since we talk a lot of medicines, there'll be an imbalance in gut flora. I read on the internet that long term drug use must be accompanied with probiotic supplement.

Keep searching on the internet for a possible cause and ask your doctor to do tests accordingly.

Post Edited (Usher) : 12/10/2013 1:58:55 PM (GMT-7)

Posted 12/10/2013 11:10 PM (GMT 0)
I note in your signature that you have lupus. Did you receive the lupus diagnosis BEFORE your Crohn's diagnosis? I had drug-induced lupus for over a year. Many of the problems you listed are ones I experienced while suffering from the effects of lupus. If the lupus diagnosis came after the CD, then have you been tested to see if the lupus antibodies are absent from your blood? All the anti-TNF meds can cause a person to develop drug-induced lupus.

Many of the problems you listed sound more lupus related than CD so I vote on getting back with the rheumatologist.
Posted 12/12/2013 1:47 AM (GMT 0)
I forgot that I even had lupus in my signature. Lol. I'm going to reword it a little to say testing for lupus. The rhemutologist said everything is pointing to lupus but hasn't officially put it in my chart. So I'm not going to say for sure that it is or it isn't. The rhemutologist has been testing me for lupus since march of last year and still won't say for sure what they think it is. They did a list of tests and I've been Ana positive every time since then that they have checked. I'm going back 12-24 because of joint pain, fatigue, rashes on my legs, and swelling in my hands. All the weirdness.
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