New to community and very anxious

Discussion in 'General Health & Wellness' started by BuffyS, Jul 6, 2011.

  1. BuffyS

    BuffyS New Member

    I am 54 years old, and aside from the usual osteoarthritis in my lower back and shoulders, never experienced the sorts of pain and discomfort I've had the last two months. My GP sent me to a rheumatologist last month when I complained about severe bilateral joint pain in my shoulders, wrists and knees and initial blood tests indicated a sed rate of 79 and negative ANA and RA results.

    For a couple of weeks, I felt absolutely horrible, tired and full of pain. At my first appointment with the rheumatologist, he guessed I had adult parvovirus. I am raising my 5 year old granddaughter and at least one of her classmates was diagnosed with fifths disease (the children's version of parvo). He sent me out for more specialized bloodwork as well as x-rays of shoulders/knees/wrists.

    My x-rays only indicated osteoarthritis in one shoulder and something strange on one tibia near the knee. I had broken that leg as a teenager so I assumed it was scar tissue appearing on my x-ray, but the rheumy sent me for an MRI just in case.

    However, my bloodwork is a whole 'nother kettle of fish.
    ACE 87 (high)
    RNP antibodies 4.5 high
    ANA Direct: positive abnormal
    Aldolase 9.3 High
    Parvovirus B19 IgG 5.8 high

    Note: My mother has RA. I have hypothyroidism which I've been treating with synthroid for the last 25 years and I've also been on antianxiety meds for 25 years.

    I was relieved at first when he pointed out the positive parvo result, but the doctor was very dismissive of that finding and honed in on the other numbers listed above. He thinks I have either sarcoid or MCTD. Sent me for a chest x-ray looking for sarcoid spots and an EMG by a neurologist. I am currently taking vitamin D (2000/day), Lexapro and Synthroid. Now the rheumy also has me on prednisone.

    The EMG came out normal (whew), but the neurologist said, "OK, your main highway nerves are fine, but we didn't check the side streets." In other words, the peripheral nerves are what are contributing to my strange tingling, muscle twitches, etc. on my bad days.

    I have been feeling better (my sed rate had dropped down to 32 since my first appointment), but the joints continue to give me pain, along with random muscle aches, twinges and very brief earaches. Clearly, there is something wrong. Some days are bad, some are good. Today was a wonderful day with minimal discomfort, but I know every day is a crap shoot and tomorrow could be another bad day.

    I am scared, depressed, and anxious for all this to be resolved. Anyone else here ever have this experience of sudden onset of auto-immune symptoms? Anyone with sarcoid or MCTD care to share their story of diagnosis and how things have played out?

    I appreciate any and all input.
  2. TwoCatDoctors

    TwoCatDoctors New Member

    I have hypothyroid and have been taking Synthroid long term, my mother has RA, and I have arthritis, not OA. I had sudden onset of systemtic lupus (autoimmune) 6 months after an accident and I developed tinnitis. No one else in my family has lupus, but I was told that RA is also autoimmune.

    I have no idea what your numbers mean. What I found is that doctors will keep you coming back to continuously recheck numbers to see if the levels change.

    What I have done is develop a system of using many pillows all over in order to get comfortable and sleep. I have to use pillows between my legs too. Anything in order to support my body and make it more comfortable for me.

    Good luck and hugs.

    [This Message was Edited on 07/07/2011]
  3. rockgor

    rockgor Well-Known Member

    Welcome to the board.

    If you look in the upper right hand corner you can find a list of boards on other
    topics that are at this same location. The board rules are also there.

    I have arthritis myself, but it hasn't really done much except make my knuckles
    swell up. There go my dreams of a career as a hand model.

    If you want to talk about non-medical topics (like kids, pets, music, hobbies),
    you can visit the Chit Chat board.