Erica Levi

Face 809Erica levi

My name is Erica Levi. I am a Wife, and a Mother of of five.   I was diagnosed with gene positive Ankylosing Spondylitis two years ago.  I have been suffering with this disease for at least six years, though.  For six years I searched for an answer.  My doctor, a top rated internes, ran a lot of tests and sent me to a lot of specialists with no answers.  We both got frustrated.  My doctor finally gave up and said it was because I was fat and stressed or all in my head.  That did not go over well with my husband whom was there with me that day.  Lets just say Old Doc was lucky he was able to see another patient that day.  My husband tried to explain to the Doctor what my husband saw everyday, but didn’t make a difference.  We left deciding to never return.

Then a blessing in disguise.  I got pneumonia three times in four months.  My new doctor sent me to a pulmonologist.  He looked at me, and how I moved from chair to the table, and told me I moved like a 70 year old not the 36 year old I was.  He said he thought I was getting the pneumonia due to my ribcage preventing my lungs to expand.  Then he said I think you may have Rheumatoid arthritis, and sent me to a rheumatologist.

The rheumatologist did some tests and came back with gene positive ankylosing spondylitis.  Wow, I had a diagnosis.  What ever it is I now know I AM NOT CRAZY!  My Rheumatologist started me on some prednisone and sulfasalazine and eventually Humira.  I am now able to sit up in bed without my husband having to pull me up while I scream to the top of my lungs.  I was feeling great once I started Humira.  It helped with the reoccurring Iritis and IBD as well.

Unfortunately, like so many autoimmune diseases if you have one the likelihood of having another is good.  I am now in a wheelchair,and I don’t know if I will ever get out.  I have been diagnosed with  connective tissue diseases called dermatomyositis and pollymyositis.  I am now trying new combos of meds.  It is difficult because with AS the more you move the better you are,and with DM/PM it is just the opposite.  The best thing I can say is I WILL NOT GIVE UP.  My advice to anyone who reads this story, DO NOT GIVE UP.  Whether it is finding a diagnoses, or the right meds just keep going.

My name is Erica Levi, and I am A Face of Ankylosing Spondylitis.

California United States of America

4 Responses to “Erica Levi”

  1. Dear Erica,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Wow, Erica. We had somewhat similar paths to diagnosis. Ignorant physicians that we weren’t afraid to fire, supportive spouses who helped stand up for us, and a non-rheumatology related physician who saw something in the way we moved and made the appropriate referral. We were also diagnosed around the same age, years after the damage was done which is sad and angering. I’m happy to have recently made your acquaintance. I foresee a long and lasting friendship.

    • Thank you! I am happy to have met you, yet sad you had to go through the same kind of events. It really bites how ignorant some doctors are. I hope in time we will change that. Xxx E

  3. I am grateful to know you, be it only on the Internet or not. You are a strong, strong woman who I admire; living with AS, with 5 boys and a husband. Wow!

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