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Mystery autoimmune illness but which one??

Posted , 13 users are following.

Hayhue
Hayhue

Hey all,

I know no one is a doctor but I'm just looking to see if anyone has symptoms such as mine or if they can relate. I'd really like any direction that points to a diagnosis and/or possible relief that I can ask my doctor. I'll try to keep it summarized with my symptoms first then what tests I've had done (spoiler: 98% normal).

Symptoms started 1-2 years ago with waking up in the mornings with very sore joints: ankles, arms, etc.. I would try to exercise (regular cardio) but the next morning I felt as if I could barely get out of bed, my body ached so bad. Thighs started aching randomly a few months after and then I noticed the heaviness in my legs getting out of a friends pool. Very insidious.

Since then, body gets so fatigued I feel as if I'm carrying twice my body weight. It is extremely exhausting to walk around a department store or even shower. Also, my brain is not necessarily always tired, just more so my body. Since then, my left leg has become very heavy and it has caused me to walk off balance. Walking on it for long periods of time is very exhausting and my foot starts hurting. It also feels as if the arch of my shoe is oddly pressing into my foot. My face, fingers, thighs, calves, and feet will twitch (not all at once). I drop things and my arms ache so badly a lot of times it wakes me from sleep or I am unable to sleep. And I experience numbness in right side of face, forearms, and shins.

I also now have slasthma and Ménière's disease.

1 like, 59 replies

59 Replies

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  • kim08822
    kim08822 Hayhue

    Posted

    Hello Hayhue. I have many of your symptoms and have recently been told i have an autoimmune disease called Hashimotos thyroiditis. Had another blood test last week to check for various conditions as i have multiple tendon problems in hands and feet. The doctor has asked to see me to discuss the results which only means one thing to me and that is they have found something else. Has your doctor requested more specific tests for you. If not then it may be worth mentioning it it them
    • margaret22116
      margaret22116 kim08822

      Posted

      Yes I think it is something along those lines. Sorry for your diagnosis but glad you have it and can move in with treatment.
    • Hayhue
      Hayhue kim08822

      Posted

      I do have hypothyroidism so it may be a possibility. I see the rheumatologist January 10th as long as it doesn't snow too much because I have to travel an hour away.

      The other rheumatologist couldn't get me in until June of 2017 so I'm choosing to travel.

      I hope your answers bring you relief!

  • logan5566
    logan5566 Hayhue

    Posted

    I am also being misdiagnosed. I have a positive ana test result and a borderline result for the lupus test the double strand dna antibody test...whatever that means. I have very very sore shoulder blades/scapular muscles. The pain has been spreading to my neck and down my back. My feet are always freezing. I am praying right now that someone can help me. Please!!!
  • Hayhue
    Hayhue

    Posted

    Update 3/30/2017:

    Hello everyone! For anyone following, I finally got to see a rheumatologist! He did say I had some inflammation show in my blood work - and he gave me other bloodwork to do - but he doesn't believe it's autoimmune.

    He diagnosed me with fibromyalgia. He said there's a slight chance if it's not that it may evolve into something overtime but I most definitely have fibro. He explained that it's both neurological and musculoskeletal which is what I've been experiencing.

    I hope this helps anyone out there that has been suffering. It took me a year and a half and countless doctors (as it does many of us). If anything changes, I will let you all know!

  • Sarge13
    Sarge13 Hayhue

    Posted

    Hi,

    Sounds like auto-immune to me too, but maybe it's just a rare one lime I have, that they only found by accident.

    The disease is called IGg4 auto-immune disease and secondary symptoms to this can be, but not limited to.... MS, Pancreatitis, Retroperitoneal Fibrosis (I have this), it causes problems with your vascular system, as it wraps around and can constrict some pretty essential veins and arteries, which in turn will have an effect on circulation to your peripheral extremities.

    You need to be under the care of an immunologist if you do have an auto-immune disorder.

    Good luck and don't wait to have yourself diagnosed so you can cross this one OFF the List.

    - Rob

  • Sarge13
    Sarge13 Hayhue

    Posted

    Hi,

    Sounds like auto-immune to me too, but maybe it's just a rare one lime I have, that they only found by accident.

    The disease is called IGg4 auto-immune disease and secondary symptoms to this can be, but not limited to.... MS, Pancreatitis, Retroperitoneal Fibrosis (I have this), it causes problems with your vascular system, as it wraps around and can constrict some pretty essential veins and arteries, which in turn will have an effect on circulation to your peripheral extremities.

    You need to be under the care of an immunologist if you do have an auto-immune disorder.

    Good luck and don't wait to have yourself diagnosed so you can cross this one OFF the List.

    - Rob

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