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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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  • denae14404
    denae14404 Hayhue

    Posted

    Have you had a brain and spine MRI to check neuropathy? I had similar symptoms to this, my left leg was numb for ages as well. Turns out I had two brain lesions In that part of the brain causing the symptoms. They weren't entirely sure of the cause but said viral illness that went to the brain or mild stroke (was only 26 at the time). Have you looked into MS? Hope you get some answers!

    • Hayhue
      Hayhue denae14404

      Posted

      Yes, 3 brain MRIs, 1 brain CT, and full spine MRI - no lesions. All normal. Confirmed by multiple neurologists.

      Doc was going to do spinal tap but I don't have any lesions.

    • Hayhue
      Hayhue

      Posted

      And my symptoms are bilateral - both sides except my left leg is heavier.
    • vicky89033
      vicky89033 denae14404

      Posted

      hi look at the above reply lymes does show lesions on brain scans its worth looking into
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Hayhue

      Posted

      OK, so too young for Polymyalgia. Has Fibromyalgia been ruled out? That is usually diagnosed by finding certain points on the body sensitive to touch (painful).
    • Hayhue
      Hayhue MrsO-UK_Surrey

      Posted

      The doc rescheduled my January appointment and then I rescheduled because I had the flu so it's set up for the 28th of this month with the rheumatologist. Hoping he can at least help me one way or another!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Hayhue

      Posted

      Hayhue, if he's a good rheumy, I'm sure he will.  I've just seen your post saying that you live in the US - I have an amazing one who people travel miles to see but he's in the UK!!!!!!  Good luck for the 28th - not funny living in permanent pain.

  • JenInCali
    JenInCali Hayhue

    Posted

    Hi. I'm thinking a couple different things: one is fibromyalgia. And a question, have you ever had any blood clots? Miscarriages? Strange questions I know but your symptoms sound a lot like mine. I have fibromyalgia and an autoimmune disorder called antiphospholipid antibody syndrome. Look it up as well as fibromyalgia and compare some of your symptoms. I'll be interested in hearing what you find.

    Take care, Jennifer

    • Hayhue
      Hayhue JenInCali

      Posted

      I've actually looked up Fibro before and thought I've had it or MS because they mimic each other so much.

      I thought I had CFS (chronic fatigue syndrome) too. I've been looking into that.

      I've never had any miscarriages or bloodclot before.

  • cynthia_65456
    cynthia_65456 Hayhue

    Posted

    The most reliable recource to get an idea of what is going on with your body is through The Mayo clinic OR Cleveland clinic in Ohio!

    • Hayhue
      Hayhue cynthia_65456

      Posted

      I do live in PA so it wouldn't be a far drive but I don't think my insurance would cover it and I definitely cannot afford the Mayo clinic lol unfortunately.

      Thanks tho!

    • cynthia_65456
      cynthia_65456 Hayhue

      Posted

      I understand that BUT...you can use the mayo clinic's web site to help educate you about your illnes. However Do not stop from seeing a medical professional!! I believe that I said something about getting a referral from your family doctor and said to get them to forward you to a Rhumatoligst. A Rhumatoligst would be able to give you some more Definative ansewr's!!

    • Hayhue
      Hayhue cynthia_65456

      Posted

      Ah ok. Well I've been researching everyday since this all started so I have a few ideas as to what I think it could be but nothing definitive that's why I decided to ask the general forum here.

      Yes I am going to go to rheumatologist and hopefully if they can't help I'll be put in the right direction!

      Thank you!

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