Jump to content
Sclero Forums

aodom

Members
  • Content Count

    5
  • Joined

  • Last visited

About aodom

  • Rank
    Newbie
  1. Me! Me! Me!!! My most common state of being is to be so very hot with freezing hands and feet. I do switch, however, and end up sleeping in socks, gloves, full pajamas with 2 blankets and a comforter (and sometimes even have to get completely under the blankets, including my head.
  2. aodom

    U3RNP

    Thank you for the comments! Joelf...you are absolutely right! I am so sorry for my comment. Nobody wants this. I should not have written that and I apologize!
  3. aodom

    U3RNP

    Well, that was not really what I wanted to hear! Was hoping someone would say that my history sounds NOTHING like scleroderma. I did check and I tested negative for the other 2 antibodies. It is strange that I keep thinking of things that might be related that I just blew off before. I suffered stress fractures of both ankles and both knees 5 years ago (age 40), took forever to heal. I had a bone scan and had osteopenia. I focused on taking calcium and my last bone scan was fine. I started having bilateral knee pain about 10 years ago (at age 35). I just always thought I had arthritis, although there was absolutely no reason whatsoever for me to have had that at such an early age (no sports, no injuries, no family history). Again, just thought I was being a baby and put myself down. The last 2 years I have started having back pain, especially when standing for long periods of time. I don't like to complain or give in to discomfort so I never was seen by a doctor for any of these issues (except the stress fractures). Just have lived on ibuprofen and aleve. I really, really, really do NOT want this!!
  4. aodom

    U3RNP

    I really don't have any idea what to think. I was tested because I was having hand pain and swelling and cold hands (but not Raynaud's). This went on for over a year with using various arthritis/Raynaud's gloves, heating pads/blankets. I did not go the doctor until I starting having decreased use of my hands (could not hold a knife to cut vegetables/meats, hard time holding a pencil, jar lids a nightmare). Having any degree of limited use of my hands is not acceptable with my job. A trial of steroids completely resolved my symptoms (temporarily). Looking back, I have a pretty extensive list of issues that I never considered related but now I wonder. Symptoms started 10 years ago at age 35: -Some unknown vascular issue that caused severe post partum bleeding (requiring blood transfusions), 2 D&Cs (with severe bleeding after each) and ending with necrosis of my uterus after the birth of my 3rd child (had hysterectomy when he was 5 weeks old). Pathology done twice but cause was unknown. -Esophageal spasms: 1st scope showed severe GERD and narrowed esophagus, 2nd scope 2 years later (for same symptoms) showed visible Barrett's but negative biopsy. Gallbladder ultrasound and hepatobiliary iminodiacetic acid (HIDA) scan 2 years later (for same symptoms) showed no stones and decreased function of gallbladder but did not need surgery. -5 years after hysterectomy (at age 40) developed pelvic collapse of everything down there (bladder, vagina, rectum). TERRIBLE surgery with severe bleeding needing multiple units of blood. -2 years later, had repeat surgery to fix the failed attempts to fix the rectal issue but had also developed rectal prolapse and had 6 inches of bowel removed. -I have sleep apnea and sleep with CPAP but have issues with swallowing air that is most likely caused by relaxation of esophageal sphincter (so my sleep physician states). -Continued bowel issues that drives me absolutely crazy! Afraid to tell my surgeon that I still have prolapse and the other issues I was having trouble with are even worse now than before the surgery. I see at least one more surgery in my "near" future but I had complications after each surgery and need to forget the painful recovery (and waking up with a medical team and a crash cart sitting next to me when my brain decided it did not need to breathe anymore). -Tried to take up running a couple of years ago (thinking if I was in better shape, I would feel better) and despite running 3-4 times a week for 6 months, I could never run (jog) more than 1/2 mile at a time due to shortness of breath and tightness in the chest (was very hard on myself and thought I was just a lazy, horrible out of shape woman (but was never overweight) and gave up the idea of running). I have no skin issues. Just cold hands with occasional swelling. So my symptoms are a bit weird. They very well may not be related to anything but it sure seems like a lot of problems for someone less than 46 (just had a birthday). I was not expecting ANY abnormal lab results so was very surprised when I saw the results. My rheumatologist put me on plaquenil 4 months ago and my hands are remarkably better!! No swelling, no pain, have not been wearing gloves or using heating pads, and I can cut my own meat now. I still have issues holding a pencil/pen and writing much - thank goodness for computers!! Filling out clinic forms can be very difficult! So I continue with plaquenil and wait and see. Maybe all this goes together or maybe I just have a bummed-out body at age 46. Either way, it is a bit depressing. Thank you for the advice!!
  5. aodom

    U3RNP

    My ANA was 1:640, nucleolar pattern and I was referred to rheumatology. Repeat ANA at Oklahoma Medical Research Foundation was 1:320, nucleolar pattern with all tested autoantibodies negative, however.... "bands consistent with U3 RNP" were found and this was "supported by immunoflorescence" but my doctor had not ordered that test so I did not receive a positive or negative result. It was recommended that this specific test be done (which it has) but will take a couple of months to get results. Cannot find any information (of course) on how likely this is to correlate with a positive result or how likely it is a false positive. I searched the forum for U3 RNP but did not find information that would help with this. It may be that nobody will know the answer and that is fine - just thought I would ask. Thanks in advance!!!
×
×
  • Create New...