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It seems like Lupus?

Discussion in 'Not Diagnosed Yet?' started by CaraBear, Feb 20, 2020.

  1. CaraBear

    CaraBear New Member

    Hi all,
    I’m Cara I just joined the site. I’m 37, now a disabled stay at home mom, and served active duty military for 9 years. I’ve been struggling for the past ten years to figure out what exactly is wrong with me. After hearing a few times “you should be tested for Lupus” from my Gyno, Neuro, and family MD that I didn’t see regularly, I had tests done, these were my results.
    -2016- positive ANA of greater than 1:40
    2017 positive ANA of 1:80 Nucleoler pattern and the same result again in 2018. I never got to see the neuro dr who wanted me tested bc he ended up leaving the practice shortly after and my referral then expired. In 2018, my rheumatologist who ordered the last ANA retired. ‍♀️
    I’m vitamin D deficient so I take 5000 vitamin D daily. the rest of my “autoimmune” blood tests appeared normal
    These are my symptoms and some insight, also, my Mom has RA/Fibro, I have been previously diagnosed with Fibro, Reynauds and have pretty severe Endometriosis.
    I’m waiting to see a new Rheumatologist but it’s going to be a minute bc I’m in a small town so the appointments are slim pickings.

    Anyways, this is what I’m dealing with:

    • Severe chronic fatigue
    • Waking up tired, never rested
    • Reynauds Phenomenon...hands are always freezing turn whitish blue
    • Positive ANA Nucleoleor
    • Joint pain- Entire spine (Cervical,Thoracic, Lumbar, Sacrum) Sacroiliac joints, Knee joints, Shoulder joints, Wrists from time to time
    • Loss of bladder control/incontinence/emptying issues/ bowel issues, diagnosed w chronic interstitial cystitis and neurogenic bladder, experience frequent bladder/kidney infections
    • moderate/severe endometriosis
    • Infertility issues/ 3 miscarriages
    • Major Depression Disorder/Anxiety/Nightmares/Insomnia... depression so bad I can’t get out of bed on some days
    • Memory issues... short term, seems to be getting worse fairly quickly
    • Slow would healing
    • Mouth sores,Hand sores
    • Low fevers
    • Migraines
    • Dizziness/blurring/vision issues when I stand up
    • Some Balance problems, clumsiness
    • Eczema /Discoid type rash that flares up, is itchy.
    • Very light butterfly rash but when I’m flaring up or in the sun awhile or my skin reacts to something, it stands out.
    • Losing my depth perception, run into corners frequently, bump into things often
    • Confirmed radiculopathy at L2-L3 level (this was due to back surgery mishap, experienced a dural tear)
    • Also... I’ve had 7 doses of the Anthrax Vaccine/Small Pox/Typhoid Vaccine... (women in military more likely to have lupus per Lupus website)
    • Served in Afghanistan, exposure to many chemicals, burn pits, also was the haz person for years in my shop, handled aircraft chemicals known to cause cancers etc
    So... what do y’all think


  2. Kiewi5

    Kiewi5 Member

    Hi Cara, I’m sorry you have been experiencing so many symptoms! I hope you can see your rheumatologist ASAP; I hear you when you say it can take awhile to get in though. I am concerned about the possible neurological symptoms you are highlighting including balance issues, clumsiness, incontinence, cognitive/psychiatric issues, visual changes, and migraines as these could possibly be due to Lupus. But of course, I’m no doctor and lupus is sneaky and it can present itself in so many ways. What does you neurologist say? I would bring your symptom list to your rheumatologist a long with any notes about timeline and severity of symptoms because I think that could be very helpful. I had odd symptoms for awhile before my lupus diagnosis and just thought I was a hypochondriac until the symptoms got really bad all at the same time. I would come to find out that the symptoms were all related. Now I am trying to find out if some of the newer, odd, seemingly neurological symptoms I’ve been having are lupus related, because I’ve learned you never know! Also, I was told that blood values can fluctuate and don’t necessarily match up with your current experience of pain and severity at the time. I learned that from the wonderful people here, as I was feeling again crazy because I was miserable but my blood values were improving. I really hope you get some answers and get to feeling better!
    Last edited: Feb 21, 2020
    CaraBear likes this.
  3. lazylegs

    lazylegs Moderator

    Welcome Cara,

    The ANA may be discounted by doctors since it is very low and you have autoimmune diseases in the family. Your other symptoms are significant though. Personally I would be trying to see a Neurologist along with a Rheumy. Several diseases share symptoms and yours may be difficult to sort out. Multiple things may be going on.

    The vaccines appear to be from a live virus so may be a contributor to your problems. Your doctor may need to do some investigating in that area.

    Good luck with your appointment when the day finally comes. In the meantime feel free to ask questions.

    Take care,
    wolf1 and CaraBear like this.
  4. MissDaisy 1

    MissDaisy 1 Member

    Hi! Cara,

    I don't know where you live, haven't checked your profile, but I encourage you to make an appointment to go to UCLA Health. I see Dr. Modi in Porter Ranch. I too live in a small town and we don't have a permanent rheumatologist. We do have one rheumy who visits our area on a monthly basis.

    If you can not go to UCLA, I would suggest going to a major health center as it could be easier to get an appointment. With somewhat rare diseases, in my humble opinion, it's best to see someone who has had experience.
  5. Lori ODonnell

    Lori ODonnell New Member

    Hello. Have you tried the VA? I go to my VA which is 2 hrs away because of where I live but they will find you a Rheumatologist. I see a Pulmonologist as well as a GP.
  6. keebler

    keebler Moderator

  7. pagespark

    pagespark New Member

    Hi Cara, I agree with our fellow good people here, please see a neurologist and a rheumatologist. That's a lot of symptoms, I hope that you get over with it (might not be all but some) soon.

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