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Neurosarcoidosis Please help

Posted , 4 users are following.

rachelhawley
rachelhawley

I've had 3 strokes, surgeries on both my hips because the meds the Dr's threw at me is now killing my bones.

I was diagnosed with sarcoids after 3 years of me running to the Dr and ended up on all sorts of depression meds because they basically told me I was crazy.

My first stroke landed me at Mayo Clinic in Rochester, MN

There I was diagnosed with Neurosarcoidosis, a PFO ( hole in my heart) and Factor V Leiden (a cloding issue)

I had another stroke during an angiogram procedure. 1 in a 1000 chances they had said. I had one on their table. I most definitely got everyone all excited for a while.

They gave me a higher dose of prednisone until I simply could not handle the side affects. Then we tapered, and started methotrexate. But not fast enough because mixing prednisone and with Factor V can kill bones. And that is excatly what happened.

I'm very upset!! These Dr's knew it could happen.

I can bounce back from side affects from methotrexate but I can't bounce back from my bones dying.

I had surgery on both hips about 4 weeks ago.

I stopped taking almost ALL medications because I had another stroke 2 month ago. Their meds are not helping.

I went to the hospital the day of my last stroke and they told me that I have the flu and I should go home and drink water.

I was very dizzy and throwing up.

My nerves in my back along my spine are fried. My legs don't sweat because of it.

0 likes, 6 replies

6 Replies

  • janie41527
    janie41527 rachelhawley

    Posted

    This sound alwful...and seems to be a common prob that doctors ect are not doing or know enough...lots of people seem to be in the same boat...very frustrating disease and def helps to join support groups ect...ive only been diagnosed so far with lung but am trying to get as much info as possible..hope there is a solution for you.

    Janie😊

    • rachelhawley
      rachelhawley janie41527

      Posted

      Thank you for reading. I have a hard time sleeping. I would love to join groups to help each other.
    • janie41527
      janie41527 rachelhawley

      Posted

      Its so helpful but have to admit a little bit daunting finding out more about this disease..im trying to get a decent neuro who specializes in sarc as im pretty sure my brain is affected.

      6 yrs of being told your depressed ect and being treated like a hypochondriac takes it toll as well and i cant believe how little is known about it but when i was told it was in my lungs i must admit id never heard of it..anyway hopefully you looked me up and can give u info on the groups cause you are def not alone😊

    • rachelhawley
      rachelhawley janie41527

      Posted

      I did look you up. I think I send you a friends request. I do have a pretty good neruologist. I was taken very serious when I had my first stroke.

      What symptoms are you having in your head?

  • janie41527
    janie41527 rachelhawley

    Posted

    This sound alwful...and seems to be a common prob that doctors ect are not doing or know enough...lots of people seem to be in the same boat...very frustrating disease and def helps to join support groups ect...ive only been diagnosed so far with lung but am trying to get as much info as possible..hope there is a solution for you.

    Janie😊

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