Time Just eludes Me…..Fighting Stiff Person Syndrome ♡♡♡

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Seriously,  where does the time go?  It’s like the hour glass has been damaged , so the sand is running out at great speed. I wish I had the ability to freeze the passing minutes ♡♡♡

As you are probably aware my sweet peeps, my treatment regime has changed somewhat, which is giving some positive effects 🙂 However, to have the privilege of a few hours saving grace with my tots, I have to undergo three days of IVIg, which lasts usually twelve hours each day, without complications…..on a regular eleven day cycle, So it truly does feel like after I have had my three day infusion , and take a few days to recover…..its almost time to go back to the hospital again. But those good few hours that I reap from the treatment are magical 🙂

The IVIg causes so many adverse reactions for me…..it is extremely difficult for my body to tolerate, despite my Neurologist and my infusion team taking every safety measure possible. Tomorrow (26/8/14)  I am trying a new brand of Intravenous Immunoglobulin……I silently wish, that this, combined with extra Intravenous  Steroids , Chlorphenamine and a  slow rate administration of the IVIg will minimise the constant pain and detrimental effects I have to endure.

I have been given a treatment programme of 90mg of IVIg for the next three cycles off treatment and then 80mg for another six cycles…..on a continual eleven day basis. In addition, my seizure medication is now part of my daily medication , instead of it only being administered during a seizure. So far, I am finding this helpful, thank goodness. I must say, my Neurologist is being extremely vigilant and is now accepting the seriousness of the next steps we need to take. He is currently in contact with London, asking a leading Consultant in autoimmune diseases his opinion regarding the HSCT, whom I have already had the pleasure of meeting and gave clarification to my diagnosis. This gentleman works very closely with Haematology…….and I am very hopeful that they will consider me to be the first person with Stiff Person Syndrome to have the Stem Cell Transplant procedure done her in the UK. It really is remarkable, that this maybe a possibility. However, I understand  I will also remain part of the on going trial that has already been implemented in different areas of the globe.

See the photograph above? Me and my sparkly smile…..constantly fighting the ghost, every second of the day. The smaller picture is of me during my last IVIg Infusion……as you can see, it is not an easy treatment for me. However, one has to weigh up the positives against the negatives. To me , a few hours of relief sporadically, is worth the rest of my time fighting.

So its an early 4am start for Jason and I tomorrow…..despite our troubles, he will be by my side taking care of me, he really does have a kind heart…..but sometimes the circumstances in life can become overwhelming. Try closing your eyes and imagining your life was stolen from you and your family…..how would you cope?

So my sweet peeps, I will arrive tomorrow at the hospital, with my positive attitude and sparkly smile, as always….silently wishing the Infusion will run smoothly xxx

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15 thoughts on “Time Just eludes Me…..Fighting Stiff Person Syndrome ♡♡♡

  1. Nerri,
    I am so sorry about everything you are going through with this dreaded illness. You seem like a genuinely kindhearted loving person and wonderful mother. It breaks my heart that you are suffering with this and I pray you find peace and health.
    I too have been diagnosed with Stiff Person syndrome (Gad65 positive and neurological workup at top university hospital) a bit over 3 years ago and have had a difficult time finding treatment to slow the disease. I am 33 now and although my condition is not yet as advanced as yours sounds, I am deteriatoring and worsening quite rapidly and have very little quality of life. I have done several rounds of IVIG, plasma, steroids, immune suppressant, and all the symptom management meds (benzos, Baclofen, ect.) with little success. I understand what your are going through and how difficult this can be. Like you I was living a very normal life… working, dating, Grad school, playing music & sports, and doing many normal and enjoyable things that were all strpped from me and things have never been the same since. Everyday i wake up now to manage and fight the illness . It is easy to want to give up some days but reading stories like yours have inspired me to keeping fighting. Thank you for this. I wanted to actually email you if you have an email to share or feel free to email me at… AnthonyS165@yahoo.comJust had a couple questions about medications and some other things. Thanks again and I hope stay strong and overcome this. I will keep you in my thoughts and prayers.

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    • hi Anthony
      I haven’t written here for a while as you can see, so much other stuff going on with the SPS. In fact, im due back in hospital in a few hours for further IVIg. Like you I have tried everything, but nothing seems to slow the progression down. So its the same regime of 11 days break then 3 consecutive days of infusions. For some reason my body isnt tolerating the IVIg very well, so not looking forward to the next few days. However, I will smile my way through as always 🙂
      Please if I can help you in any way, let me know okay, my email is nerriberri@hotmail.co.uk
      sending hugs
      Nerri (Lindsay)

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  2. Nerri,
    Thanks for the response. I hope the IVIG is going well. I know what you mean about not tolerating it too well. I just did 5 days about 4 weeks ago and still have migraines, flu like symptoms and some left aseptic going on, but I did get a bit of releif with the SPS and I hope the same for you. Keep in touch and hang in there 🙂

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    • Hey Anthony 🙂
      Lovely to hear from you. Im sorry that you are having issues with your IVIg too. I have to be awake in 4 hours ready for day three …. struggling pretty bad if im honest. I wonder how long I can manage this treatment every 11 days. I find by the time I have recovered from the side effects, it’s almost time for me to go back in hospital. However, im still smiling as always and laughing my way through it all as best as I can 🙂 How often do you have your IVIg Anthony. .. is it alway 4 weekly?
      It’s lovely that you got in touch, maybe we can help each other kick SPS to the kerb lol.
      Take care, write soon x

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  3. Oh we will kick this thing to the curb kid! Don’t you worry! 🙂 Right now I am not on any regular schedule for infusions. I am trying to see if my insurance will cover 2 or 3 maintenance treatments a month but we will see what happens… It’s always a racket dealing with them. Unfortunately it seems like I am experiencing a bit of what you are… Initial improvement for a few days to a week and then it starts wearing off very quickly and I start wondering if I am worse off then before I even did it. Can’t tell if it’s helping or hurting in the long run but it did get me walking again this last time so that was good. Guess it’s tough trying to figure it all out but I am sure you can relate. Hope that last infusion goes okay. Are you still looking to do stem cell transplant? Seems like there are some encouraging reports of it working for SPS. Think I have seen 3 successful cases in the last years. Talk soon. Take it easy.

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    • hey Anthony , love the way you call me “kid” when we are the same age lol.
      yes, I can defiantly relate to everything you are saying with regards to treatment. Its like being stuck between the devil and the deep blue sea , not quite knowing what’s helping and what’s not.
      Where are you from, as you have writen about insurance being an issue? If the IVIg is helping, then surly it would make sense to have your infusions at regular intervals……. jezz my mind boggles at times concerning such issues.
      well as for me, my infusion wasn’t easy…. needed intravenous Steroids and Chlorphenamine every 6 hours throughout the 3 day infusion , to enable my body to tolerate the Immunoglobulin. I didn’t start feeling a little better until last night (Saturday). Still haven’t made it out of bed, but who knows what tomorrow will bring 🙂
      Yes I am still hoping to have the Stem Cell Transplant. If I am finally refused here in the UK to be the first person to have it done who has SPS, then I will continue fundraising with my “one in a million” team and go overseas to take part in the trial. We have already raised approx £52,000 ….. I am fortunate to have such a strong and dedicated fundraising team 🙂 Not sure if you have seen my gofundme page? If not, its http://www.gofundme.com/838nac
      There certainly are some encouraging reports concerning the HSCT. Have you read the journal recently published by Doctor Atkins? I have just been on Skype with my best mate Sam…. I have written about him on here. He was the first candidate in Denver to have HSCT to treat SPS, he is doing amazingly well 🙂 Including Sam, I know of 7 other people who have had HSCT in total to date …. and more candidates are awaiting to take part in the trial based study. So its looking good Anthony 🙂
      So my fight continues, as does yours my friend
      take care x

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  4. Whats up Nerri,
    Lovin the Go Fund Me page and glad to see you are getting some contributions…. really want to see you get there and get the treatment. Read about Sam and Dr. Atkins on your blog and it was all very encouraging!! Also did some reseach on Dr. Atkins and not only does he look like the right man for the job but he kinda looks like “Saul” on the show Homeland right? 🙂 You guys get that one over in the UK? I am from New York. Grew up on Long Island and have been living in Manhattan the last 8 or 9 years. Yeah SPS in the big city…. that’s gotta constitute as some kind of oxymoron right?!?! But then again, SPS is kinda like an oxymoron of a condition in many ways. Anyway, l hope your hanging in there. Keep in touch and keep me posted with everything.

    Anthony

    Liked by 1 person

    • hey Anthony 🙂
      Hope you are doing okay my friend?
      WOW, SPS whilst living in the Big Apple …. now that is a challenge.
      Thanks for taking a peak at the gofund me site 🙂 people have been so sweet and kind with their support and precious donation gifts. But i also have an amazing dedicated and determined “One in a Million ” team, who have been the driving force behind my campaign …. they are the most beautiful kind hearted souls, who are literally , eating , sleeping and breathing , fundraising events and ideas ….. im one very blessed girlie in that respect:) I haven’t made an entry update there for a few months, so really need to get on top of that. especially emailing a personal thankyou for each, much treasured donation,
      its good to hear you read up on Sam and Dr Atkins 🙂 i was just talking to Sam actually …. he is doing well . He is a pretty awesome guy 🙂 As for Dr Atkins, yes he is a wonderful man ….. i wish he could help, but i need to be a Canadian resident for at least two years prior to acceptance. of cause, this is completely impossible. Anthony, you make me smile though…. yes we get that show here too 🙂

      Well since i last wrote to you, i have been back in hospital for IVIG ….. had an appointment with my Neurologist today, with a change in protocol in the New Year ….. and im due back in hospital for further IVIg on Monday, Tuesday and Wednesday.

      I need to write another blog entry explaining the changes that are planned for the New Year …. but my words just are not flowing tonight. I guess im pretty exhausted after my appointment today.

      stay safe sweetie 🙂

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  5. Nerri,
    Happy New Years to you! How are you doing? I hope your hanging in there. Was wondering if you are still doing the IVIG and if you have had any sustained improvement. I have not done any sessions in a little while now mainly due to some problems with my a insurance but I am most likely due for a round as things have been starting to get a lot more difficult. Still on the hunt and hoping to eventually find that magic bullet that cures this or even helps improve it a little! I am hoping that magic bullet for you is stem cell. I had a chance to make a bit of a donation for you a little while back and hopes this helps. Keep me posted with everything and drop me a line whenever you get a chance. Take it easy.

    Anthony

    Liked by 1 person

    • hey Anthony, i have missed having you around buddy 🙂
      I did send you an email to thank you for your sweet gift …. i assumed it was from you 🙂 Thank you my dear friend, and yes it will help me greatly.
      Sorry i haven’t replied sooner, but i have been in hospital having my IVIg this week …. yes same regime , every 11 days for 3 consecutive days. Pretty exhausted now, post IVIg always knocks me down before it helps. But no rest allowed for me as I have a heap of things to sort out ready for my first Stem Cell Transplantation consultation on Monday. Yes is really happening Anthony …. well i am wishing with all my heart that Monday will be the turning point to beating the ghost for me.

      Anthony i wish i had a magic wand and could make the SPS vanish for you. I cant believe your insurance isnt paying out for regular IVIg for you. i hate the thought of things becoming even more difficult for you. Hang on in there buddy …. your magic bullet is out there waiting for you, i just know it is 🙂
      Take care my friend …. i will let you know what comes of Monday xxx

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  6. Wow Nerri I am really glad you have that consult Monday for stem cell. Praying everything goes well for you. And thanks btw for wishes with that magic wand! I think it would be really fun to get cured by a magic wand! 🙂 Sounds like it would probably have a lot less side effects than IVIG!! Please let me know how Monday goes kid. Hang in there and keep on it… Sounds like your approaching the home stretch. No pun intended with the “stretch”. 🙂

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    • Hey buddy 🙂
      Yeap Monday went exceptionally well. I saw an amazing Specialist that has as much fighting spirit as me 🙂 looks like I may have found my angel 🙂

      Im back in hospital Monday, Tuesday, Wednesday for my infusions again. Same regime … 11 days off 3 days in lol.

      How you doing Kid? …. man you make me laugh when you call me that 🙂 Hope you are fighting with a smile too 🙂 xxx

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