A Snap Shot Of My Pain…..Spasm Caused By My Living Nightmare Of Stiff Person Syndrome

This is a snap shot, of just the start of one of my spasms, which lasted for a few hours.. It is a recording taken by my husband in London Hospital Queens Square during my admission in October 2012,. It was requested by one of the leading Consultants to help correlate my symptoms.
This video was taken before i began to embark on my journey of Plasma Exchange. What you see in the video is nothing compared to how it progressed. My husband had to stop filming because he needed to assist me through my pain as it progressed, and prevent me from choking. I was denied my medication, i was denied any help. if you listen carefully at the end of the recording, you can hear me trying to communicate. begging for Madasilam , as this was the medication prescribed for me by a consultant who visited me at home from a local Hospice. Jason and i were very wary about using this drug, However , as my lungs become rock solid during spasm, i am literally suffocating.Therefore , it was used to help relax the spasm, it worked very well when needed, At home i was prescribed liquid Madasilam, for Jason to rub into my gums and also in the form of sharps. During a spasm, my jaw is affected, along with the whole of my body from head to toe . Therefore, Jason would carefully rub a small dose into my gums, because i am unable to open my mouth or swallow during a spasm.
On request for my medication , the doctor said NO. They made me suffer for hours, the spasm becoming more aggressive . It feels like every bone is breaking, every muscle being torn apart, my internal organs so badly affect by such server contractions affects my heart lungs, even my brain and skull, feeling like i am being crushed in side.

I am a prisoner in my own body
How is that possible ??? Stiff Person Syndrome x

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10 thoughts on “A Snap Shot Of My Pain…..Spasm Caused By My Living Nightmare Of Stiff Person Syndrome

    • hi Criley

      it varies , but i have spams triggered by the simplistic of things, like having a shower for example. The only way to try and control them is to stay reclined in my bed, no noise, light , moments. im hunched up in solitude most of the time, unable to even snuggle with my tots as their voices appear so load to my body.
      i have not been downstairs in my home since before Christmas, it causes unwanted painful episodes.
      this blog has taken everything that i have inside, as one last attempt to get my voice heard and raise enough finances for a Stem cell Transplant……its my last hope.
      without such a beautiful group of sincere friends, not even this would be possible as i don’t have the strength or cognitive capability to do this alone
      much love
      nerri xxx

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      • I don’t have much family hunnie unfortunately.
        But i do have a handful of sincere friends who turned up in my life, when everyone else left me.
        The last few days they have been brain storming ideas for me. i had no idea how to set up a blog or start a charity. So i am very much in the early stages of getting a SCT as financially i just can not afford it x

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  1. You poor, poor lady, I suffer from a Cervical Variant of SPS but it does not compare to what you are going through as it only affects my neck and shoulders and a spasm, although very painful, only last about a quarter of a second!! For what its worth my treatment, which seems to be keeping it at bay a little is IVIG every 6 weeks and Clonazepam daily. Clearly yours is very different to mine!! My sympathy is with you and your family and my heart goes out to you. Try and stay strong. Bob x

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    • Hi Bob
      I am overwhelmed by your commission and empathy.
      I understand your pain too, and im so sorry you have to endure your illness. I’m so happy that you’re specialist is helping you gain a little relief from your symptoms.

      Thank you for being so kind and caring.
      Much love
      Nerri xxx

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  2. Hi, my son Danny is in reception with your little boy, I felt I had to say how brave both you and Jason must be, it just goes to show how little we sometimes know about people whose paths we cross every day. If you do manage to sort out fundraisers please tell Jason to pass the word around school as I’m sure there are other mums who would like to help also. Stay strong – you’re kiddies are a credit to you both xxx

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    • Hi Jane

      Thankyou you so from the depth of my soul, how beautiful, kind and caring you are.
      Jason said you are so lovely, as are little Danny and your new baby daughter. I just wish I had the pleasure of meeting you too.

      Please, now you know our circumstances, could you please take an extra moment of your time to support Jason , if he is looking a little sad some days….I would really appreciate it.
      He is an exceptional daddy, which certainly doesn’t go unnoticed with me, it’s beautiful to see the strong bond they all share together as a family 🙂

      What a wonderful suggestion about word of mouth around the school, thankyou sweetie. Every idea and suggestion is crucial for me right now.

      A wonderful friend of mine came here and cwtched on my bed will me, trying to secure an individual fundraising campaign.
      However, the tax office sort of blew our idea out of the water, as the money will be classed as an income, even though it is purly for medical treatment. I have cried and sobbed this evening, trying to find the answer to this problem, but I am at a loss.
      Out tot’s are main priority and I refuse to leave them in financial difficulty, as the financial support we recieve at the moment , will be with drawn.
      This really needs to be sorted ASAP, as it’s imperative we start rasing funds for the stem cell transplant at this moment.

      Much love
      Nerri xxx

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  3. Hi nerri,
    I haven’t got much of an idea how these things work but feel sure there must be a way around that – my mother in law has helped to organise some charity evenings for local causes so I’ll see if she knows anything. In the meantime I’ve shared your blog with some of the other mums and well see what we can come up with to help (if that’s ok). How much do you have to raise. (Don’t mean to pry so please don’t feel obliged to answer)!
    And remember – you can do this!

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    • Hi Jane sweetie

      I cannot believe how beautiful you are, so kind and caring. …thank you.
      It would be wonderful, any information you can find out, any ideas you, your friends or mother-in-law may have.
      You can ask as many questions as you wish darling, my story is now public domain, lt is being heard in many area’s of the globe.
      Originally we thought the fingue would be approximately four hundred thousand, but since speaking to some beautiful friends global, the fundraising figure may be substantially less.
      I really cannot thank you enough hunnie
      Much love and fairy hugs
      Nerri xxx

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