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Old 06-14-2008, 11:13 AM   #1
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hukleberrie HB User
Weight loss, pain, bowel changes, ear problems....

Hello. I hate to bother you all. I tooled around in here a bit before I decided to post....

I have been really sick for the last year & recently doctors are thinking I may have some sort of autoimmune disorder, possibly Lupus or RA (or rare disease). At first it was thought that I had Crohn's Disease, but my biopsies have come back clear for granulomas.

I don't have any rashes currently (although I have had rashes when i was younger, mostly on my hands. These rashes looked like pimples at first that would break open & crack & then would look like scales. The doc at that time said I was allergic to dust & dirt because the rashes happened only in the summer time.)

I have lost about 50 lbs. so far. I am struggling to try to keep my weight up, which is crazy because I was always about 30+ pounds overweight since the birth of my son 15 years ago. Is weight loss normal with Lupus?

I have also been extremely tired. It's hard to function sometimes, but I have to. I have 3 jobs & 2 kids & a husband. Life is too busy. My husband really tries to help, but I think he is getting tired of doing everything for me. I am so weak since I have lost so much weight...

I guess I was having bowel problems as well. I had a colonoscopy in October that showed a couple small ulcers & the biopsies showed colitis. I was put on Azulfidine. I kept losing weight & ended up the ER with dehydration & potassium loss. I ended up seeing a GI who said she was pretty sure I had Crohn's. But she did another colonoscopy in April after being on Prednisone for a while & she said there were no granulomas or signs of IBD, so I must just have infectious induced IBS. (They think maybe I had c.diff caused by being on Cipro for 3 weeks following a kidney infection. That's about when all this began, with a kidney infection.)

My labs have been okay, some things off slightly, but nothing too concerning. I was sent to a new DO the other day who decided to do some new testing, ANA, RF, CRP, & ACE level. I have just recently switched PCPs as well who had referred me to this other DO due to my pain even after OMT. My new PCP ordered a slew of tests as well, stool tests & B12 & CBC & Comp Metabolic Panel & a bunch of stuff. He did say that at one point my protein was high. My WBC has been high as well, but I was on prednisone a bunch of times (the last time I was on 20mg for 2+ months).

I just had surgery on my ear for fluid in it for the last year. The fluid wouldn't go away & became really thick, which is I guess why it wouldn't come out. But I have a tube in now so I can hear again!!! I don't know if that is related....

I did have surgery for ovarian cysts as well. Had a D&C & hysteroscopy due to abnormal bleeding. Things seemed to be okay with all that, but my periods are now really long & there isn't much time in between. Can't be menopause because I am only 34. I don't understand it.

I am so sorry this is long. I am trying to think of anything that might be pertinent. There has been so much that has happened to me over the last year.

Does any of this sound similar to anyone's symptoms? Just wondering....

 
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Old 06-14-2008, 11:34 AM   #2
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Re: Weight loss, pain, bowel changes, ear problems....

Hi, Wow sorry about everything you are going through. I cannot really help I am waiting for a dx also. Just want you to know that you are in my prayers. My son is 17 and has crohns. I have uveitis and polyneurothpy,knee pain,finger and wrist and very very tired all the time. My blood work is pointing to lupus. Good luck to you and I hope you get a dx soon.


Sallie

 
Old 06-14-2008, 11:51 AM   #3
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Re: Weight loss, pain, bowel changes, ear problems....

Hi & welcome. I'm between Sat. errands but want to post a shortie... I had HORRIBLE irritable bowel-like problems for 20+ years; had multiple colonoscopies, sigmoidoscopies, and upper/lower GI tests. None found signs of inflammatory bowel disease, yet my problems persisted.

I also had bizarre periods, many lasting 3+ months, from age 14 to mid-40's.

Other problems included migraines, weight loss, low B-12 & folate, tingling & numb sensations, hair loss, fatigue, joint & shin pain, sciatica, chronic cystitis, and stones once in awhile. Last thing to arrive: targetlike nonscarring rashes, on arms & torso, on photo-exposed skin.

My Dx was the SCLE variant of SLE, positive for anti-Ro but negative for ANA. Since my local drs. thought you could have lupus ONLY with a positive ANA, they took years to get precisely nowhere. I finally took myself to a teaching hospital rheumie who took less than 1 month to get confirming back & start treatment = Plaquenil. It's done wonders!

For what this is worth... Do you know if your drs. ran *all* the specific autoantibody tests? I hope you post more when you can. Bye for now. Sincerely, Vee

 
Old 06-14-2008, 12:15 PM   #4
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hukleberrie HB User
Re: Weight loss, pain, bowel changes, ear problems....

Thank you soooo much for posting....

I have had hair loss, by the way. I have really thick hair, so most people wouldn't notice it, but it was my hair stylist who asked me if I was on hormones or something. Normally she thins my hair, but for a while didn't thin it at all. She was sure something was up with my health, which I knew there was.

My period had gotten really long, like 6 weeks once, right before my surgery for the ovarian cysts, which seemed to grow really large, but must've burst right before my surgery because they weren't there when he went in!

I just started getting migraines in January. I went to the ER for a bad headache (and the dehydration & such) and I argued with the doc when he told me I was having a migraine. He said he would try the imitrex & I did and it took care of it. Now I take maxalt which helps a lot.

They thought I had a stone with my kidney infection but a few tests later, they said I didn't. I did, though, have some crystals in my urine. Blood periodically. Things like that.

I really try to stay out of the sun, really. I swell pretty badly & just don't tolerate it. I wonder if I would get a rash if I actually was in the sun?

Lately I have been having these low grade fevers. Nothing over 100 though, although I am usually 97.2-97.7, so 99.5 is high for me. I just get this flushed feeling. The DO I saw the other day felt it in my neck. She said you are really warm....

I don't know if they ran ALL the tests needed.... I am not really sure what is needed. I really have been thinking that I had Crohn's for so long, everyone really thought that. My last doc didn't know what to do with me, and luckily the doctor that I had been seeing for OMT for my joint pain said he would take me over. He is sure there is something & thinks I may have to go to a university to find my answer.

The big thing I want to get rid of is my hip/low back/pelvic pain along with this thoracic rib I have out of joint. The DO I saw Thursday said it won't go back until the underlying problem is fixed. I couldn't believe that bowel issues or anything like that would cause the rib to come out of joint, but she said it sure will. Any inflammation can pull your joints.

I really try to keep positive. When I switched to my my new doc I see for my joint pain for my first visit, he said he was surprised I was handling it all so well. What else can I do? I have to live still... I can't cry about it all the time. (although when I started my period so early AGAIN this morning, I did cry.) It's nice to know I have somewhere to go to share my problems. I was kinda hoping that these symptoms were not symptoms of lupus, though.

What again are all the tests I should have?

 
Old 06-14-2008, 02:52 PM   #5
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Re: Weight loss, pain, bowel changes, ear problems....

Hi. The first "sticky post" at the top of the thread list ("stickies" are permanent info posts) will help you find the test info you seek. (The other 2 "stickies" contain great info, too, if you haven't read them yet.)

Dr. Daniel Wallace's hardcover also lists an amazing array of tests, for lupus & its "close cousins", too. Most libraries stock it.

I've never heard of ribs being "out of joint"---but, then, there are loads of things I've never heard of! I have heard of something called costochondritis that causes rib pain where the sternum meets the rib. Others here know a lot more about it than I do, though (sorry).

I was also convinced for years that I had some unnamed bowel problem, because that was my #1 problem for at least 10 years. Then other stuff appeared, leaving me more confused than ever. If not for my rashes (3 or 4 times yearly), I'd have thought MS, due to balance problems, tingling, etc. I was JUST SO SURPRISED to find out that my GI problems were rooted in something non-GI, if you know what I mean. And my current rheumie was equally shocked that my suburban drs. didn't look outside the realm of GI-only conditions...

Anyway, hope this helps some. Bye for now, Vee

 
Old 06-14-2008, 06:03 PM   #6
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hukleberrie HB User
Re: Weight loss, pain, bowel changes, ear problems....

I did read the stickies... don't really understand it all. I guess I have to read it over & over. Seems like a bunch of tests that I will need. I hope they did them all. They did a couple, I do know that. But not all the anti tests.... I guess we just have to wait to see how the ANA comes out & see where we go from here. Seems like a long process. I hope it's all negative for me. I really don't want any autoimmune diseases. I hope they are wrong about thinking I have something like that....

The rib is out where it connects to my back, not in front. I have been seen concerning this by so many doctors... my first PCP, my DO, the new DO my DO referred me to, a GI, 2 general surgeons and tons of docs at the ERs & Urgent Care. Plus the physical therapists. They thought I may have a slight case of scoliosis as well. Very mild though, if I do.

I was seen by a rhuemie way back in high school with tendonitis in my ankle. He said I will have arthritis at a young age. I wasn't sure why, but my DO says I probably will due to hypermobile joints.

I really didn't think I had Lupus. I always thought I just had pain due to something being off or my body being a bit jarred or something. For a while I thought maybe I was nuts. Now I know I am not nuts, but I still am thinking it can't be lupus....

Is weight loss common with Lupus?

 
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