S0 Hard To Breathe…..Fighting Against A Ghost, Stiff Person Syndrome xxx

Hi my sweet peeps

I travelled to Sheffield 23/1/16, its now two days later and I am in the hotel still trying to recover from my journey, in preparation for a private appointment I have tomorrow.

My apologies if my video is difficult to hear, but I am struggling to breathe due to server fatigue and painful spasm.

The journey was excruciating . I am led here, just an out line of a shadow, of a girl who was once full of sparkle . However, I count myself fortunate as I have JJ with me …… despite our past hurt and struggles in our personal life, JJ has been a tower of strength with his positivity, physical care and commitment in the fight to find me medical help and treatment …… so i would like to say , from with in my soul, ” thank-you JJ you have truly stepped up to the mark for me ….. without you this journey would not be possible. It could potentially be the beginning of the end of my suffering……. in turn give our babies their mummy back . Thank you for holding my hand through the pain, rocking me through my tears, my heart will forever hold your kindness, strength, determination and faith in me….. tight under lock and key, no matter what “.

I lay here, trying to focus on the beautiful memories in my life …. makes the pain a little easier to bare. I can still see JJ and I at 12 years old becoming each others best fiends, climbing trees in the park without a care in the world …… I see us growing up and falling in love without realising it….. yes a lot of awful hurt has happened over recent years between us but that is irrelevant, as JJ is are here, with me now, continuing to help me fight. I can see in my mind, the last cuddle I had with my babies, almost feel their warm arms around me, smell the sent of comfort on their clothes, hear their sweet voices, and see their angelic smiles .
I can picture my mum, sister , nanny and grampy….. I am lighting up inside, as I feel their love, safety and gentleness, surrounding me, even though they are not here physically.

I have become so stiff and fatigued JJ has been doing everything for me, from holding my cup of coffee so i can drink …. encourage me to eat …. give my medication, carefully manipulate my muscles and joints to try and release the grasp of the ghost ….. take my weight so I am given the dignity to use the bathroom, help me clean my teeth ….. there’s nothing he wont do for me, and for that I am blessed.

Some peeps are a little muddled regarding my disease and treatment progress. I wish I had all the answers , but even I am finding it difficult to comprehend. So I will try and clarify as best as I can.
The plan was for me to have a stem cell transplant in the summer of 2015. However, a certain neurologist challenged my diagnosis which put a hold on the SCT , that I was ready to begin with an exceptional haematologist who gave amazing support , along with my local neurologist. All that was required was the agreement of one more neurologist . Therefore, it has become a quest , to find a neurologist who is willing to support my case…….. and make history , as I will be the first person in the UK to have a SCT as a potential treatment/remission/cure for SPS. This will be monumental for all SPS sufferers in the UK.
Concerning the ongoing trials around the world, the numbers are still minimal ( as its a one in a million disease) , but results are phenomenal ….. this is extremely encouraging , and more and more sweet peeps are choosing the SCT as a treatment option in the areas of the world that the trials are available.

My regular neurologist has halved my IVIG infusions, and completely with drawing them in March. He refuses to continue my regular treatment regime , despite my plea, yet my body is already suffering detrimental effects from the half decreased dose. The regular infusions were giving me a quality of life to a point. but now I am barely existing …… so my fight for the SCT is all I have left to potentially give me my life back ….. give my babies their mummy.

love and hugs as always xxx

will i win my fight against the ghost ?

precious tots ….. i love you xxx
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5 thoughts on “S0 Hard To Breathe…..Fighting Against A Ghost, Stiff Person Syndrome xxx

  1. Dear Nerri,

    I’ve just read your letter and am horrified your consultant is stopping Ivig!
    How did your private consultation go? I pray it went well. I know you will either be travelling back home
    or recovering from the ordeal.
    Please could you let me know as you are on my mind.

    Gentle hugs,
    Jacqui

    Sent from my iPad

    >

    Like

    • Hi my darling Jac, it’s rather unbelievable what is happening isn’t it 😢 but Im fighting hard, still praying for a happy ending. My body is becoming so weak, but fighting for treatment is imperative.
      The consultation couldn’t have gone better… What an unbelievable, kind hearted gentleman, who looked at me as a person before his eyes instead of a number. The proffessor certainly knew the disease very well indeed and was able to clarify my diagnosis. His opinion will now give me the backing to move forward with a solid diagnosis.
      I have a long journey ahead…. A fight I’m not sure I’m going to win…but I would rather fail trying with heart, than not try at all. I refuse to give up no matter how difficult each moment is.
      Much love and fairy hugs to you xxx 💜

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  2. Hello Nerri
    Your plight is beyond words, but relief will come.
    My partner bloodtest revealed an antibody of some kind that is strong evidence towards SPS & after watching your videos we know she is another 1 in million STD sufferer. As you know it’s far from simple just to get this far.
    Can I ask if your still suffering spasms?
    Our thoughts are with you x

    Liked by 1 person

    • Hi Andy
      I have quite a bit to explain in my next blog entry as alot has gone on since.
      Like you said, this whole journey is far from simple, and certainly a battle to get this far. Please, stay as strong as you can for, not just your beautiful wife, but for yourself too. I know how scary the “ghost” can be, but please keep hope, and remember I’m here if I can help.
      Yes I know the antibody your are referring to, its called anti GAD antibodies, which at high levels in the serum is a bio marker for SPS. My levels are > 2000 but everyone with SPS have different levels. With this test alone, I have learnt a concrete diagnosis is questioned. To be diagnosed with SPS, it’s like fitting a jigsaw together. So with your wife’s clinical presentation, symptoms and blood test being positive, her neurologist will probably want to carry out futher tests.
      I had a lumber puncture which revealed I also carried significant high levels of GAD in my spinal fluid. But with my spasms being so aggressive and deterioration so rapid, my diagnosis was questioned.
      So more recently, I have been to see an incredible Professor and neurophysiologist, to stamp my diagnosis once and for all. Within minutes the professor knew exactly what as have, and so did his college due to their expertise in this field.
      A nerve conduction study /EMG were carried out….. And again marked positive and in keeping with suffering from SPS.
      With this in mind, my regular neurologist has given me my IVIg infusions back, of which I had yesterday and the day before. It’s hard to tell if it’s going to help as I have been deteriorating at a rapid pace due to lack of treatment. So fingers crossed it will help me breathe more easily in a few days.
      My apologies for the lengthy answer but I thought it may help with the next step to helping your wife gain a firm diagnosis so she can be given the correct treatment so needs.
      Unfortunately, yes Im still suffering with spasms daily.
      When I go quiet on my blog, it tends to be because I’m having trouble with the ghost, so please accept my apologies for my silence at times.
      Sending much love x

      Like

      • Thankyou for your reply….. Length is never an issue, it’s the content that matters and, altho sadly, you are an expert so nevertheless long.
        Got to say she’s not my wife, not that it makes a diference to her needs.
        There is much I could say but my cynical side believes some things are OK via public space & some things aren’t!
        Sorry if I’m ignorant of things incase this question isn’t positive:
        Is it possible for Jason to contact me (or me him) to speak about possible relief. In fact so far we are successfully undoing the Spasms.
        I accept good chance that individual circumstances will affect individual SPS, meaning what works for one may not work for another, but what if it does?
        Hence request speak Jason, in belief that’s best route unless you have another? With our best wishes xx

        Like

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