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I've got 99 problems but Sarcoid ain't one

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Autoimmunegirl
Autoimmunegirl

Hi, I am 32 years old and have a myriad of autoimmune issues. It all started 2 years ago when I was running a marathon - I almost didn't finish because I couldn't breathe. After lots of tests and biopsies (and being in ICU for 3 weeks) I was diagnosed with TB.

I went on TB meds for 6 months and had tests done again and my lungs had gotten so much worse. I was fed up by this point so I went to the Mayo Clinic and they did a lot more tests on me - i felt like a lab rat. After all of that I am still un-diagnosed as I am showing signs of multiple autoimmune conditions, but they cannot pinpoint one specifically. I went on a course of steroids which seemed to help my lungs, but i struggled with them as I had heart palpitations and suffered from anxiety and fear of impending doom

I have the following issues/symptoms:

- was diagnosed with Crohn's disease in 2011 (which has subsequently disappeared- very weird) 

- granulomatous inflammation in my lungs (nodules that make me light up like a Christmas tree)

- severe hair loss and inflamed scalp

- weight loss

- itchy skin and itchy eyes (can no longer wear contact lenses)

- chest pain

- anxiety and depression

- thyroid indicators of Graves/Hashimotos (elevated antibodies)

I am not on any medication now because the doctors are just guessing what I have and I dont want to subject myself to the side effects for no reason.

I am constantly stressed about my condition and I dont know if I will just stop breathing in my sleep. I have struggled over these past 2 years, just to come to terms with this all.

I have made drastic lifestyel changes, I have gone gluten free, grain free, dairy free and everything yummy free.

I went to see a Functional Medicine doctor who I have been working with for a year now and he also doesn't know what is going on. I have done gut-healing protocols and I am on a bucket load pf supplements.

The docs basically want me to be on deaths door before I can have a diagnosis, when i tick all their boxes.

I am grateful that I am still able to live a relatively normal life and do things most people can. I am trying so hard to hold onto these moments because I don't know what I have and how long I have. 

Thanks for all your support! 

Yours in health...

Autoimmune girl

0 likes, 2 replies

2 Replies

  • barbara54291
    barbara54291 Autoimmunegirl

    Posted

    Just fyi, sarcoidosis causes granulomatosis. I would definitely suffer a biopsy to at least have a diagnoses. It took them 20 years to diagnose me, so I totally get your frustration.
    • Autoimmunegirl
      Autoimmunegirl barbara54291

      Posted

      Thank you barbara 54291, I have had 3 biopsies already. Not sure how many more I need to go for?

      It’s been a hectic and very stressful time for me. I am not who I used to be that’s for sure!

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