A.S. Face 0786: Michelle Letney

Face 786 img_0002Hello, I am a 34 year old single mother of two.  I started having back pain many years ago.  I went to many doctors, who always brushed me off.  I went through many years of physical therapy with no diagnosis.  In September of 2012 I went and saw my primary again.  She came into the exam room, and without even an examination, she said to me “there is nothing wrong with you, you are too young.”  I told her that is why I was there.  My body felt like I was 90 and I knew that wasn’t right.  Again she tried to blow me off to a pain management doctor.  I told her that I didn’t want to cover up my symptoms with pain pills, I wanted someone to believe me.  I asked her if she thought my pain was all in my head,  She touched my arm with her index finger and said, “that doesn’t hurt me, but it might hurt you.”  I was enraged, “that doesn’t hurt!” I exclaimed.  There is something wrong with me.  I am inflamed, I cannot bend down to empty the dishwasher or put clothes in the dryer.  I would have my 10 and 11 year old children pick things up off the floor for me because I could not reach.  After a days worth of work, I had to go straight to bed.  It was not all in my head.

The doctor finally said in snotty voice, “Ill check your inflammation markers, if they come back normal then you’re fine.”  A couple days later I received a call that my inflammation markers were elevated and she would refer me to a rheumatologist and a physiotherapist. After multiple testing and MRI’s I received the worst news of my life.  It was Tuesday after Thanksgiving of 2012, 5:30pm, the rheumatologist called me and said “please don’t get excited, your results were abnormal, but we don’t believe it is arthritis, we believe you have cancer, multiple myeloma, in every vertebrae of your spine, I can no longer see you and an oncologist will call you next week to schedule an appointment.” I was shocked.  I cried.  I thought all these years I’ve told them I hurt.  All these years they told me it was all in my head.  If they would have believed me, maybe I would have a fighting chance.  All this time wasted.  Maybe it is so progressed they can now do nothing for me. Am I going to die?  Who will care for my kids?  Do I quit my job?  Do I pay my mortgage payment?  Who is going to care for me in my last minutes?

I made an appointment with my primary again.  I balled in the office.  I said they think I have multiple myeloma, a non-curable cancer in every vertebrae of my spine.  My primary cried with me.  I could see how bad she felt for telling me there was nothing wrong with me.  She asked me why I lost 30 pounds in 11 weeks.  I told her I never wanted a doctor to tell me my back hurt because I was 30 pounds over weight.  She said she would have never done that.  I looked at her and said “have you ever told a patient her knee hurt because she was over weight?”  She lowered her head, and softly said yes.  That day my doctor filled me up on pain meds, anti depressants, and anxiety pills.  She told me to speak to an attorney right away and make arrangements for my kids for the day I pass.  I was in such shock, my life was flashing before my eyes.  I would leave my kids motherless.  They would have nothing but memories.

I took this attached picture in hopes they would have the memory I always wanted them to have.  I wanted to take it before I perhaps lost all my hair.  I wanted to take it before I looked sick.  I wanted to take it so they would remember me forever.  This picture was taken December 2012.

It took a while to get into the Oncologist, as my insurance has to get a pre-authorization for everything.  When I saw the doctor, he gave me so much hope.  He said I looked healthy, and most multiple myeloma patients look “sick.”  He wanted a bone marrow biopsy right away.  However, again, we had to wait another week because of insurance pre-authorization.  These pre-authorizations were driving me nuts!!  I wanted to know now my fate and start planning for my children’s futures!!  Finally after the biopsy, I had to wait another week for the results!

“No Cancer cells located in your bone marrow!”  I was free I didn’t have cancer.  My kids would have a mother!  I have never been so grateful for anything in my life.  The Oncologist again referred me back to the rheumatologist, who diagnosed me with Ankylosing Spondylitis in January 2013.  He stated he had never seen an MRI like mine and he was sorry for the scare.  People say I should be angry, I should sue.  I say, people make mistakes and I am so happy the doctors were wrong.  I feel blessed to have AS.  I know it is something I will battle the rest of my life, but I also know this is a battle I can win!

Michelle Letney

Oregon, United States of America


7 Responses to “A.S. Face 0786: Michelle Letney”

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

  2. OMG Michelle, what a story, I thought mine was bad. Nice to meet you, I blog about my story here http://battlingankylosingspondylitis.wordpress.com/
    But wow, it doesn’t touch yours, still I was just as happy as you to have the diagnosis of AS even though it’s a horrible disease, it’s just so good to find out what’s wrong with us 🙂

    Take care, Jane 709

  3. Oh Michelle thank you for sharing your story, it brought a lump to my throat. Bessings Mick Face 11

  4. Jeesh Michelle….I don’t think I’ve ever been MORe happy to hear someone has AS! “sorry about the mis-diagnosis” is fricken right. Stupid radiologists.

  5. Thank you everyone! Honestly, I’m truly blessed to have AS! My back hurts like hell, but I will be her to watch my kids grow, watch them graduate highschool, get married, become parents if their own! Without the missed diagnoses I may not be as positive as I am about the situation. I know what’s important in life and AS will never take that from me!

  6. Puts things into perspective. Love your positive attitude.

  7. Michelle,
    My gosh – incredible how the one doctor scares the living stars out of you – how awful, however I’m glad to see you hear and read your story !
    I too have been approached to “sue” for the misdiagnosis. When it involves your children, I’m sure anyone would react and feel the same way – immediate protection mode. Anyhow, I’ve been back in school and completing my Business Mgmt degree this month. It was my choice to go back to school to give me a new start again. I do have a vision, and I’m going to do whatever it takes to continue on !
    Welcome to a wonderful family of fellow AS’ers here. Hope you find much resourceful information, a fantastic family of support, and I wish you WELL and happiness 🙂

    Candyce Sindelir #700

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