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RainbowPearl

643d

I've hit a stall in getting diagnosed. I have Sjogrens which means I have another auto immune disorder but don't know which one. I also have a lot of neurological symptoms. Does anyone have any advice? We're really struggling.

Top reply
    • McD43

      506d

      @TwinMommaBear what is pots

    • Keex

      594d

      Lupus

    • Rachelliz

      594d

      How were you diagnosed? Are you taking any medications specifically for Sjogren’s?

    • SparkleFlyer

      607d

      Those symptoms could be primary Sjogren’s. Neurological issues and brain fog are common.

    • TwinMommaBear

      619d

      Have they looked into POTS?? Could be why you are passing out but seems like everything else fits with what comes with the syndrome

      • McD43

        506d

        @TwinMommaBear what is pots

    • Janella

      642d

      I was first diagnosed with MS then found out through testing that I have sjogren's

    • Hunnyb316

      643d

      It took over 4 years to find my secondary autoimmune diesease. Hang in there!

      • RainbowPearl

        642d

        @Hunnyb316 what was the final piece or pieces for you getting diagnosed?

        • Hunnyb316

          642d

          @RainbowPearl I started having more symptoms that kind of led us to a more narrow pool of bloodwork to be done. I had Ankylosing Spodylitis for years and just recently got diagnosed with Sjögren’s syndrome. It’s a huge relief to finally have a dx. I know it will be for you too.

    • Cathyliz

      643d

      Sjögren’s can be primary, meaning it is possible to only have that. Are you seeing a rheumatologist?

      • RainbowPearl

        642d

        @Cathyliz I had no idea Sjogrens could be primary. My rheumatologist said it always came with another auto immune disease

        • Pindy

          607d

          @RainbowPearl , it can be primary. I have a rheumatoid factor of 298, a positive ANA, anti- CCP of over 200, a high sed rate but do not have RA. Just sojgrens. Have been getting test for another autoimmune disease, myositis but so far it's negative. But when I was having the symptoms, Dr gave me 7 days of Prednisone and symptoms went away.

      • RainbowPearl

        643d

        @Cathyliz yes but I'm at the point where I'm seeking a second opinion. I also have abnormal weight gain, abnormal stretch marks, may or may not have a pituitary miroadenoma, heat and cold intolerance. Fibromyalgia, polyarthritis...I just don't know what to do anymore. I can't work, can't drive, can't go places on my own.

        • Newtworthy

          643d

          @RainbowPearl it's going to be okay. I know it seems overwhelming right now but you and a doctor are going to figure this out and it's all going to be okay. I would absolutely get a second opinion, your Dr needs to diagnose you so you can be treated properly

    • Taurusgreen

      643d

      What neurological symptoms?

      • RainbowPearl

        643d

        @Taurusgreen short term memory loss, muscle spasms and hand tremors, nominal aphasia, (speech problems) random passing out followed by complete memory loss for the day, and worsening migrains.

        • KCL

          613d

          @RainbowPearl ask to be tested for POTS! Also get your thyroid checked.

        • Sunshine_0309

          635d

          @RainbowPearl i go through almost everything you listed and i was told the memory loss is due to the pain i battle from fibromyalgia and the passing out is psuedoseizures.

        • Taurusgreen

          640d

          @RainbowPearl my thought is possibly same as mine I have sjogrens and fibromyalgia and my systems are similar

        • qveenofthecastles

          642d

          @RainbowPearl omg I'm so sorry 😔 if you ever need to talk I'm here

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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