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New here. I'm wondering if anyone can figure out what's wrong with me?? or any ideas?

Posted , 2 users are following.

casjul
casjul

I"m 34, female white. Negative ANA test. Going to see the rheumatologist on the 14th. I've personally had

A couple seizures that started around puberty (grand mal)

Migraine headaches

Anemia (at different points in time)Allergic reactions to soaps/detergents

Rashes that they thought were ringworm, but didn’t respond to antifungal treatments (mostly on thighs or stomach) scaley round

 PCOS- multiple follicles on both ovaries

Infertility (got pregnant with clomid, lost 1 pregnancy)

Preeclampsia in both pregnancies (the first was worse than the second ;and led to induction because my blood pressure got so high they were worried about seizures, was hospitalized on magnesium, and put on bedrest until induction at 37 weeks  )

Hernia above belly button, started during pregnancy (mesh repair)

Bleeding cyst on right ovary (OB fixed with hormones)

 Estrogen Dominance- Trying progesterone cream to balance that out

Miscarriage

·         Possible early menopause

·         Multiple growths (left butt cheek lab came back as non cancer, cause unknown with nacrossing tissue in the middle tentacles shaped like an octopus according to the surgeon), lymph node removal (reactive non cancerous)

·         Multiple cysts on my breast (removed non cancerous)

·         A couple months back I had a low grade fever that lasted weeks, when I wasn’t sick.

·         Gallbladder removed due to a huge stone blocking the cystic duct.

·         Eczema (scalp, face) scales, peeling, irritation (frequent and recurring)

·         Carpal tunnel syndrome (had release surgery done on right wrist)

·         Anxiety-using valium to help with this

·         Insomnia- ambien treatment

·         Depression- can’t take antidepressants, cause a manic response

·         Shoulder pain (pulling tingling sensation that sometimes spreads into upper right arm, and causes tension headaches)

·         Dry skin

·         Always cold

·         I had gained a significant amount of weight over the last 12 years (went on keto diet and lost 111 lbs, over 15 months)

·         Fingers and toes cold and going numb. Toes turning blue sometimes.

·         Dry eyes (can’t wear contacts for more than a couple hours or they literally fall out)

·         Tmj

·          Memory loss and forgetfulness

Aphantasia- Inability to visualize anything.

Trying to get an idea before I go in. I have a family history of Lupus, but ANA negative, so primary care said that was unlikely. Also my mother has degenerative disc disorder. 

If anyone has any ideas, let me know. I don't know what to think since that ANA test came back negative.

 

0 likes, 6 replies

6 Replies

  • margaret22116
    margaret22116 casjul

    Posted

    Hi. Sounds more like Sjogren's with the dry eyes. Rheumatologist is a good idea. Do you have dry eyes too?

    Sometimes ana test can be negative and you still can have auto immune disease. Very elusive in blood work. You need a good competent rheumatologist x

    • casjul
      casjul margaret22116

      Posted

      Yes i do have very dry eyes. I can't wear contacts for more than an hour or they will literally fall out from dryness.

    • casjul
      casjul

      Posted

      Another thing is every year at my eye exam my eyes are worse/ weaker.

      I divvy know if that's relevant to this thing though.

    • casjul
      casjul margaret22116

      Posted

      I was looking over at Wiki about Sjogrens, and though I haven't noticed my mouth being dry, though I'm always drinking something, something I had forgot to add popped up that I hadn't thought about being related. When I was in high school I had mono (EBV) and for that showed up as a possible cause for Sjogren's. I don't know much about the condition, so I'm going to look into it some more. Thank you so much.

    • margaret22116
      margaret22116 casjul

      Posted

      Hi yes that seems significant doesn't it. I often find through fellow sufferers that they have a profile, a history which is complex and auto immune issues are flagged up along the way.

      Also you mention apart from dry eyes and mouth the coldness in your hands and feet. Many sufferers of auto immune sufferers also seem to complain of a kind of Raynaud's phenomenon.

      I think the visit to a rheumatologist would seem to be a good starting place for you. I hope you find answers.

  • margaret22116
    margaret22116 casjul

    Posted

    Oh and by the way ....the sleep deprivation, the anxiety and memory loss are all part and parcel of these disorders. But I have to say I always knew I was not an overly anxious person. Sleep deprivation, unexplained pain and illness is enough to make anyone feel a bit anxious. My sister has just been diagnosed with sicca syndrome and the specialist is now looking at blood tests to establish if there are significant antibodies present to diagnose Sjogrens. She has not been sleeping due to the discomfort of her dry mouth and this was making her feel much worse. She also had joint pain. She was prescribed amitrypteline (which did nothing for me and made me feel worse) and she is feeling so much better after a couple of nights of good sleeping. The brain fog and fatigue are significant symptoms with a lot of auto immune disorders.
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