Hi everyone! haven't actually been diagnosed yet but have appt. on14th with rhuemie, so hopefully will get some answers. Just got health insurance back recently so trying to get my health in order so went to new gynecologist for suspected prolapsed bladder,(which I have). Altho I mentioned I was being tested for Lupus he didn't seem too concerned, so I set up surgery for a bladder lift,(least invasive type), that to be Nov.2. In the meantime yesterday went back to my new General Practitioner (whom I've decided is not the one I want), because I was in such severe pain I could barely walk all weekend. I knew I couldn't wait till rhumie appt. to try and get some kind of relief. He prescribed me prednisone 20mg. 3x daily for two days then 2x daily for a week and tapered off till down to one a day then see Rhuemie. I mentioned about bladder lift and he said I shouldn't do that right now unless it was really bothering me. I told him it didn't hurt but was very bothersome. He said nothing to that. I told him I think I have Lupus and he said he couldn't say that's why I am going to Rhumie, that it's very complicated but i know from studying this Lupus board everyday that I have it. about my dry eyes, sunsensitivity, muscle spasms, rashes,severe pain,yet he says it could be R.A. also or overlapped. so anyway........ about that bladder lift.. is it dangerous to have a surgery like this with Lupus? I hate to cancel my surgery, I liked the gyno, want my life back what should I do?....Oh also my Ana test was positive, pattern, speckled, titer 1:160 H Does mean anything significant? also on this paper on the bottom it says Rhuematoid Factor 20 H Does this mean anything? Thanks and any replay is greatly appreciated. everyone on here seems so intelligent and well informed, I have learned so much and hopefully I haven't rambled on too much. thanks again.:wave
Cooker, I had chronic bladder problems before I was diagnosed: frequency, urgency, burning, ongoing dull pain, and even stones. I was seeing a urologist for these, and he considered testing me for interstitial cystitis. But because of all my other issues, he decided to hold off. Then I was diagnosed with lupus & started Plaquenil. My last (and current) rheumatologist saw my bladder problems as lupus-related---and I agree, because they receded dramatically once Plaquenil kicked in.
Maybe your rheumie's comment wasn't about "risk"? Meaning, if your problems are autoimmune mediated, surgery wouldn't make sense because it wouldn't correct those problems. Have you asked your rheumie point-blank whether lupus and its close cousins could cause them? If YES, perhaps you should consider delaying until you get more answers on the rheumatology front?
Re: your other symptoms, I had same, plus horrible GI problems, migraines, anemia, etc. Trapping answers in my bloodwork took a long time. In contrast, skin punches (with immune stain tests) done by a dermatopathologist showed very clear evidence of lupus. What do your rashes look like, behave like, etc.? Have you seen a dermatologist or dermatopathologist? Have you had a deep-punch biopsy?
I believe RF can elevate in rheumatoid arthritis and lupus---and quite possibly other things as well, so I don't think it alone is "diagnostic".
In addition to RF, what other specific tests were run? Did you get a copy of your results? Did you see other autoantibody tests like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc?
Please know above is not advice re: having surgery---more like questions I'd ask if I were in your shoes. I'm really sorry you're having these problems & hope you can get answers & help soon. Sending best wishes, Vee
Cooker, I want to refer you to the top of the Lupus Board for the sticky posts. there is a lot of information on testing, treatment, etc. I will say that just having some tests that required anesthesia, I have reacted totally different since having had Lupus than I did prior to Lupus. I say this as I do believe that my Lupus is affected by body stresses. If you think that you indeed do have Lupus, I would follow the advise of the doctor you saw that suggested postponing until you have a definitive diagnosis. I think if you read on the testing, different types of Lupus, you will see that some incidences of Kidney involvement is present in some Lupus patients. Of course, only you can make the ultimate decision. Good luck in your decision.
I guess it would depend on what else is wrong besides the Lupus to determine if the surgery is safe or not, like if you have lung or heart issues. I've had quite a bit of surgeries, last one is the only one to really bring on a problem with my breathing, but I was fine with oxygen, that was a retrocele repair, I now need a bladder repair. I don't know what your symptoms are but I have been having alot of pain and pressure, and have the constant urge to pea if I lay down, so it's hard to go to sleep, sometimes I can't even stay in bed, it gets so bad.
Hi folks, I decided to postpone the bladder lift surgery for a while until I get a definite diagnosis from rhuemie as to what it is I have. I'm assuming lupus from symptoms and positive ana test, which I know that in itself doesn't mean I have it but I have all symtoms but for it but i do have degenerative disc disease, spinal stenosis,osteo arthritis and the prolapsed bladder that I was going to have repaired because of the feeling of something "falling out" but no pain or severe urgency to go all the time, not real bad, anyway. The gyno even said I could leave it that way or have it fixed and since there was no danger of it really falling out all the way since my uterus is still in place. so anyway I listened to the Dr. and postponed until I find out if i have this lupus that i'm suspecting I have or just what ever it may be. Thanks again folks!! Pardon all the mistakes, i read this and don't know how to go back and fix em!
Hey I know this is a bit late, but I just came back to the boards after being laid up. Talk to your doctor before making a decision. With all my health Issues, I ended up having back surgery Sept 27. I did just fine was suregry one day home the next. Up and walking same day, but this is me and my 9th surgery for various things. I did have a bladder tuck when I had my hysterectomy. So it will depend on you and your doctor. I wish you the best of luck.
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