Fighting the unknown ……. Stiff Person Syndrome x

I am led here in my bed, hunched in a ball , wondering how or where should i  start……..how do i explain my story, of my pain and suffering due to the rare autoimmune disease, Stiff Person Syndrome. So i figure, the best place to start is at the beginning  🙂 

I was living my life through rose tinted glasses, forever living in a fairy tale, grasping every opportunity that came my way. I had such high expectations, i aimed each and everyday to be the best that i could be.( Those that know me well, will tell you i am a perfectionist lol )  I  would never admit defeat, giving up did not exist in my vocabulary ……. i always made the impossible, possible. That is who i was, and that is who i still am. I absolutely, point blank, refuse for Stiff Person Syndrome to rob me of my life. I am not ready to die, its not my time. I have three beautiful, precious children that i am fighting to stay alive for. My children (or tots as i call them ) need their mummy, as well as their daddy. By no means am i leaving this earth, without seeing my tots grow up!  My greatest wish is time, which stiff Person Syndrome is taking without my permission. I want to be here to steady my tots if they stumble, share their laughter, wipe away their tears. i want to see them learn , love, smile and play. I want to see them graduate, pass their driving test, fall in love, have a family of their own……………..i am begging for the chance to be their mummy……………i am pleading with Stiff Person Syndrome, not to steal my tots mummy away from them. They are still so little, age 4, 6 and 12 years old. They need me, as much as i need them, i sob into my pillow every night wishing and praying for this nightmare to end. 

 

Looking back, i can tell you the exact date, my life was shattered by this very rare, one in a million, autoimmune disease , Stiff Person Syndrome. It was a beautiful summers day, 7th of June 2009., my husband Jason had already left for work, and i was getting up to feed our 8 week old new born baby boy, and to get our one little girl ready for school, and our other little girl ready to go to a mummy and toddler morning. That was the day my whole life changed………my whole family suffered the impact of Stiff Person Syndrome with me. Over night, i went from being an active, healthy, ambitious post graduate…………to a 28 year old mummy of three who could barely lift my head off the pillow, or stand up to cradle my baby. i was overwhelmed with fatigue that was so server it is indescribable and spasm shooting in both of my legs , making it impossible to stand. it was from this day, until the moment i lay, crying here now, that my life disintegrated , no matter how hard i fought or willed it away, my symptoms continued to escalate until i am left bed bound.. 

So how did this happen??? How did i go from a young lady who was deeply in love with her childhood sweetheart, a busy active mummy, someone full of hopes, dreams and aspirations for the future………….to being bed bound???   STIFF PERSON SYNDROME

After a few misdiagnosis of, Post Natal Depression, Fibromyalgia , server Chronic Fatigue Syndrome, Lupus. i was finally diagnosed with Stiff Person Syndrome in March 2011, based on my clinical presentation and i tested positive for Anti GAD Antibodies at an extreme high level of 2000>

I have tried different medications, mostly my body has an adverse reaction to. I continued to deteriorate, my spasms/ cramps, traveled from my legs, right the way through my body, including my face, brain, and respiratory system.. During a very prolonged , server spasm in October 2012, i stopped breathing. My husband recalls me being like a “rag-doll”.  I was no longer stiff, ridged, in server all over body contractions………….i was limp, floppy,my lips blue, i was dying in his arms.  By a twist of fate, my district nurse at the time called in unexpectedly. She phoned for an ambulance and i was rushed to our local hospital. my spasms were becoming more and more aggressive, requiring intravenous Diazepam , Madazilam and oxygen to keep me breathing. I was having 4-5 spasms per day, some lasting for many hours at a time. It is the most horrific pain imaginable. It is like every bone is being snapped, every muscle torn, internal organs harden with the sever contractions , making it impossible to breath unaided. My husband stayed with me around the clock, as he was the only person who knew how to touch and move me during a spasm, without causing  further damage. Just like being at home, Jason washed me, changed my clothes, carried me to the toilet wiping me and changing sanitary towels when needed. I had completely lost every inch of Independence, dignity and self respect.. Stiff Person Syndrome  was, and still is, like trying to fight a ghost. 

I was transferred to London , Queens Square, A specialist hospital in neuroscience and neurosurgery. Here i had a Lumber Puncher , which confirmed  that i did not only have Anti GAD Antibodies in my serum, but also had crossed into my central nervous system. Stiff Person Syndrome was confirmed by a second leading neurologist, even though my symptoms were becoming extremely dangerous, aggressive spasms though my body and sever effects on my respiratory system,  I was no longer referred to as a “typical” patient with Stiff Person Syndrome, as i was and still am deteriorating rapidly.

I spent 5 week in London with my husband taking full care of me. he slept on the floor every night with me in a private room. I couldn’t tolerate any sudden sounds, light,cold,  movements, anything  could trigger a spasm.  Jason kept a daily diary of the medication he was giving me, recording my spasms, he would control the oxygen and OBS machine, he was my Angel 🙂 To this day i do not understand why the hospital staff did not care for me, so Jason could come home to our tots. They were staying with my sister , who loves them dearly, but our tots should have been allowed their daddy to come home to be with them, bless their little hearts, but no one knew how to deal with my spasms like Jason. It was in London i received my first  Plasma Exchange, a known treatment for Stiff Person Syndrome. I had 5 days of 3 liter exchange,  I must admit it wasn’t an easy treatment for me to tolerate. It is a very invasive procedure, which caused my blood pressure to drop dangerously low, along with my oxygen and heart rate. I have a video and photo that i would like to post so you can see a snap shot of one of my spasms in London and a photo of my Plasma Exchange  central line. Three days after i completed this treatment, i was able to straighten my legs by my own free will. This was close to a miracle for me, as i had been hunched up into a fetal like position for five months, except during a spasm that would force my legs to straighten through vigorous contractions, then my legs would be forced back into a hunched up position again. I was then transferred back to my local hospital where my husband and i remained until December 23rd 2012 . We had to fight with everything we had, to enable us to be home with our tots for Christmas, it had been 2 months since i last saw them. It was a very emotional time, gosh my heart was breaking, all i wanted to do was to cuddle my tots, for the nightmare to end. I remember Jason and a beautiful lady,a patient at the time, who i am still in touch with now, ordering presents online and them both wrapping our tots gifts, in between the mayhem of my spasms. Even though the Plasma Exchange significantly reduced my episodes, so to speak. I would still randomly be tormented with them, i was still completely bed bound. I was finally allowed home with a hospital bed, oxygen and a written protocol  that Jason has to follow with regards to my care during a spasm.

Still extremely disabled, I was admitted into the Heath Hospital 7 times in 2013, where i followed a devised treatment plan, put together by a Consultant in London and my Neurologist at my local hospital. i continued to have another three rounds of 5 day 3 liter Plasma Exchange, followed by 3 rounds of IVIG. I wish with all my heart i could say that i am doing much better, but that would be dishonest. Right now i am fighting for my life. Why ? i hear you ask………..well let me tell you. The results of the second Plasma Exchange was life changing. i even went to my sweet cousins leaving party, i danced, granted yes i was held up on either side by my girys lol, but i danced for the first time in 4 years. I have a photo i wold like to show you, i was so happy. However, the tears are slowly trickling down my cheeks now just thinking of how free i felt, to see and feel what it was like to live again. I couldn’t wait for the third round of Plasma Exchange, as i was excited about further improvement with my Stiff Person Syndrome symptoms. The process is certainly challenging, but it was worth it for the benefits afterwards . To be able to watch my tots run and play in the park, to snuggle up with a hot chocolate and watch my tots feed the ducks and swans………such a beautiful dream i lived for a little while……..until disaster struck on round four of Plasma Exchange. It was a poor line insertion, however it lasted my whole treatment course. On the line removal , blood was poring from where  the central line had been removed, blood was pouring out of my mouth and nose……..i suffered cardiac failure. The last i remember was the doctor trying to insert a needle into my arms, hands, feet and shouting for someone to find a cubicle, my body was shutting down. 

The disaster of the technical fault of the fourth Plasma Exchange, set my body back ten fold.  Even after having three rounds of IVIG , in  October, November and December of 2013, has not been enough to give me a better quality of life. My body is deteriorating so quickly, my Stiff Person Syndrome symptoms are having a devastating  effect.  I have not been given any hospital treatment since December 2013……..i am slowly dying. i am begging my Consultants for help. I am willing to try or do anything they ask of me. I was told in January 2014 that i needed to be admitted ASAP, this was then opposed until i saw my new neurologist, so i waited to see him and he also said i  needed admitting within a week. He wrote up a treatment plan for 1 round of 5 day 3 liter Plasma Exchange, followed by 6 rounds of IVIG every 3 weeks , whilst we record improvements and put in an application for Chemo. Goodness , i cant put into words how relieved and happy i was, maybe a little apprehensive………but he was going to help me :).  

I couldn’t have been more wrong. My promised treatment plan has since been abolished, i am still at home, left in my bed , in and out of spasm. Stiff Person Syndrome is killing me. With each spasm i suffer respiratory failure. Jason has to monitor my oxygen levels and increase it when needed, even resulting in him pumping my chest to help me breath. I am choking during spasm, vomiting, coughing up blood because my lungs are contracting so hard.. i am screaming, crying unknowingly when i can breath again. When the spasm releases from my eyes, i can see the look of fear on Jason’s face………is this the time i will die in his arms?

Jason has tried contacting the hospital, but no one will help. He just keeps getting told that this is a complex case. I have been left 4 months without any hospital treatment, when i have been told by three consultants in the last 3 months that i need to be admitted for treatment ASAP. My only hope now is a Stem Cell Transplant, but it has never been done in the UK for anyone with Stiff Person Syndrome. So my only option is to leave the country and privately fund my treatment. So i am looking into Canada, Australia, possibly Colorado, even in these countries it is still classed as clinical trials. But i am willing to do whatever it takes , i need to get my voice heard, i am suffering in silence and slowly dying. So i am wishing with all my heart that i can get my story for go globule 

I do not have the strength to fight the ghost of  Stiff person Syndrome any longer. I need to do something before its to late  

much love

nerri  xxx

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37 thoughts on “Fighting the unknown ……. Stiff Person Syndrome x

  1. You should add Dr. Richard Burt at North Western University in Chicago Ill. USA to the list of facilities you are considering. I believe he has treated others with your disease. He treated me for my MS and I can’t say enough good things about him and his staff.

    Best of luck to you, and I do believe HSCT is your best treatment option.

    Liked by 1 person

    • Hi Keith, thank you so much for having such a kind heart and sharing this information. I to believe that my only chance is a stem cell transplant.
      DR Burt must be a marvelous doctor, as i just received another email from a very lovely lady, stating that he helped her, by halting her MS in its tracks, by treating her with HSCT.
      I am unbelievably happy for you Keith, its wonderful to hear that Dr Burt was able to help you 🙂
      This is fantastic news, if Dr Burt has already treated others with Stiff Person Syndrome 🙂
      Thank you so much for caring enough , to contact me with such positive information.
      much love
      Nerri xxx

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  2. well done nerrick for putting everything together so well.it shows how educated and bright you are.what a waste not to help you.please someone help nerrick.i hope this will reach people that can make everything better for you.jan.xxxxx

    Liked by 1 person

    • Hi Jan 🙂
      I had a lot of guidance from my beautiful friend Rachael,she has been like my own personal little fairy 🙂
      I actually spoke to Kate last night, she suggested also putting together an open Facebook page with the duplicate information , as some people are finding it difficult to become part of my blog. i think this is a fantastic idea, however it takes double the energy. So i am going to see what i can manage to figure out. As you know, my energy is very limited 😦

      I have already had a response from a beautiful person in Russia, so my story is starting to hit different areas of the world after 2 days 🙂

      Thank you for your loving , continual support sweetie. I just pray with all my heart that someone with recognize my story and see that i am in desperate need of treatment.

      much love
      Nerri xxx

      Liked by 1 person

    • Margaret, thank you so much for all you love, care and support. I have the same wish, that someone, somewhere will read my story and want to help me. I am deteriorating so quickly, i am praying for a miracle. My story has drawn a little attention from Russia and Chicago, so just maybe my dream for the gift of time, of giving me a chance to live may possibly come true.
      Thank you for your much needed prayers sweetie
      much love
      Nerri xxx

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  3. This is hard reading and a nightmare reading what you go through on a daily basis. Prayers that someone listens and can help you. I’m so sad here, it is so devastating, knowing what you are going through now and the happy, positive person you still are!! Come on world, step in here and give this beautiful lady a break. Love you girlie!!!

    Liked by 1 person

    • Oh my best girly, who would have thought , me and you against the world lol. How i became to admire you, respect you , then love as one of the most positive, upbeat, honest friend i could ever wish to have found. You are so strong, and that makes me strong.
      I am so looking forward to a hug and coffee Tuesday 🙂 Lets hope we can make some headway on organizing an independent charity for my treatment. The treatment process scares me , but brings me hope. And when the time comes i will hold your strength in my heart and fight my way through with i smile.

      i can honestly say, i love you my girly
      Nerri xxx

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  4. 💞 keep fighting x we love u.
    U are a inspiration and together we will do all we can to give u the treatment/help u deserve.
    Please everyone share this story of my wonderful cousin, who i cant see as much as i like since ive moved 6 mnths ago.
    no 1 should suffer ………. or b left alone .plz help nerrick have more time with her family x
    Love u nerri always xxx

    Liked by 1 person

    • My angel Sharon , i feel your tears sweetie, but like you said, we are going to fight this. No mater how hared things become, how scared i am, i will fight until my last breath to stay with my tots. Its not my time hunnie….i know it isn’t.
      So we need to get a charity started to help fiance my treatment. Seems the doctors arnt helping me here , then i need to go to another country and pray a consultant will facilitate a Stem Cell Transplant for me. I have had a lot of messages from amazing people today with suggestions of possible Doctors and countries that may be able to help me

      I wish you were not so far away some days, but im glad that you are happy 🙂
      i miss you deeply, loveyou dearly , my sweet Sharon
      Nerri xxx

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  5. My heart goes out to you Nerri! We are here to try to support and spread the word. We need to raise awareness and educate people. But most importantly we need to help our friend. One of a kind Nerri. We have shared your story 🙂

    Liked by 1 person

    • Sweet Nancy, thank you x

      Isn’t fate a marvelous thing ? the circumstances of which we met, and how i love you so dearly now. I love the laughter and the happy times we share through our passion that we both have so close in our hearts. And through this i have found a genuine , beautiful friend.

      There has got to be a way through this sweetie, and as a team, i guess we will figure it out
      love
      Nerri xxx

      Liked by 1 person

  6. Your told your story beautifully a lot has happened in 4 years you are a inspiration to us all you should not be left like this we need help off anyone that can. Nerrick has a beautiful family and needs to watch her children grow up, love you always lots of hugs and xxxxxxxxxx

    Liked by 1 person

    • My precious godmother , Teresa

      Even now i am all grown up, you still hold me in a protective bubble. Fighting for me, loving me. I could not wish for someone anymore beautiful than you , to watch over me.

      I love you
      Nerri xxx

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  7. Well, it’s very upsetting, but so happy your getting results already!! 😉 you deserve answers, let’s hope there’s a lot more angels like Jason out there xx

    Liked by 1 person

    • Hey Hunnie, so you found me sweet Kate 🙂

      I am so glad that i have you walking by my side, you always manage to talk some sense into me. You encourage , guide me, stop me from being so afraid.

      Love you my girly
      love
      Nerri xxx

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  8. Reading your blog hunnie with tears running down my face..you are such an inspiration, keep fighting hun and you will so get the best treatment you so truly deserve..love you xxx 🙂

    Liked by 1 person

    • Sweet Becky, please don’t cry. I am going to fight until someone listens, until a doctor somewhere will help me. I have an extraordinary group of friends that are making a huge effort to make the Stem Cell Transplant possible 🙂 They are helping me raise awareness in every way possible. But also helping me with the huge task of fundraising and devising an independent charity for my treatment.
      i love them all so very much…..as i love you xxx

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  9. If there is anything I can do at all for you.no matter how big or small it is , im always here for you.With all the help and support you are having is truly amazing.xxxxxxx

    Liked by 1 person

    • Hunnie my team of girls are really working hard trying to pull all of this together. It’s like they are angels that have appeared to guard me.
      I know you are with me to darling 🙂 so any fundraising ideas, please share them with me.

      The girls are working on how to set up an individual fundraising site as I type. It’s like an absolute mind field ; ((( xxx

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  10. wow! reading your story, the first thing I feel is your amazing strength and love! of course im extremely saddened to read thebattle you are going thru…so cruel and unfair 😦
    I don’t know you personally but I know alot of people who do…my little boy knows your son also 🙂
    I truly hope your story is heard, and help is found for you…you seem to have some amazing people around you!
    stay strong, keep fighting…!!! xx

    Liked by 1 person

    • Hi Vanessa

      It’s so lovely of you to take the time to care and contact me, I really appreciate your kind words and support. Even though we don’t personally know each other, your beautiful kind heart means so very much to me.
      I have some new video clips that jason took today, that’s why he was unable to pick up our tot’s, due to me having another spasm.
      I am hoping, by open my life to the world, will somehow make a difference for others with Stiff Person Syndrome, just like myself. …it’s not my turn to die sweetie, I can’t leave my children. ..not ever.

      It’s lovely to hear that my little man has such lovely friends to play with and have fun. I feel so guilty, that my illness affects the social aspects of Dylans life, as of my princesses. What I would give for us to be able to meet up for coffee and watch our children run, laugh and play together.
      Maybe one day it will be possible.
      Sending much love
      Nerri xxx

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  11. Nerriberri, thank you for sharing your story! It makes me cry but also gives me strength! You are not alone in your fight! I have been seeing a Neurologist at Cleveland Clinic in Cleveland Ohio that has been able to not only get me out of the bed but walking again! His name is Eric Pioro. I think you can even get his opinion on your condition online.on if he may be able to help you. I too have SPS and you just have to keep the faith and don’t give up!I already know you are a fighter or you would not have posted this message online. I have 4 children of my own and we share a lot of the same hopes. Hang in there and God Bless. Lynn

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    • hi my sweet friend, i just wrote you a very long message, and somehow it has vanished, so i am going to try again 🙂
      i am so sorry i made you cry, but if my story gave you a little more strength, then that is wonderful sweetie.
      i hope you do not mind me asking, but please could you tell me what treatment your Neurologist has been giving you to get you to such a wonderful place in your life. the thought of walking across the sea front with my children again, spinning, twirling and laughing with them, is all that i secretly wish for. i have tried so many treatments, its seems like the HSCT is my only option.
      i have a number of friends in the SPS community, but we all present quite differently, except for Sam, who has become an amazing friend.
      please any advice will be deeply appreciated…..and Lynn , thank you for not leaving me alone, thank you for showing me hope.
      much love and fairy hugs
      Nerri xxx

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      • Dear Nerriberri, after seeing so many physicians each one would prescribe a new medication for me to help with my symptoms, and each time the symptoms continued and would get worse. This went on for years until I found myself at Cleveland Clinic for an unusual bilateral hearing loss. Immediately I was referred to Neurologist after Neurologist until I met with Eric Pioro. At that time I was taking around 18 medications a day and couldn’t walk and was in agonizing pain from spasms and stiffness.. He started me on a very low dose of diazepam and when I reacted in a good way to that he started weaning me off the other meds and started increasing my diazepam. I also take gabapentin and pain killers, vitamin d3 and a couple others. I still have to wear oxygen when I sleep but my progress has been given me another chance to have a life outside my bedroom. He also has various other treatments for this syndrome, this is just the one that is working for me at the moment and I am very grateful for it. He is familiar with this disease and has other patients fighting the same fight. DON’T GIVE UP! 6 months ago I was writing my will now I am planning a graduation party. Be aggressive and persistent.I feel for you and you can e-mail anytime! I am always looking for a new friend who shares SPS.

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      • i am already taking Diazepam daily. I have had four rounds of plasma exchange, and for rounds of IVIg, last year. I am due back in hospital now for further IVIg, then more plasma exchange and hopefully a good strong case for Ritoximub will be compiled. I too am on oxygen intermittently. So to be strong enough for the HSCT, i need to be off the oxygen. i am now at the point where i have to consider writing a living will……im 33 years old 😦
        Im so happy you have found something that works for you
        sending much love and fairy hugs, Nerri xxx

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      • Dear Nerriberri, you are so young to have to endure this I am 46. Can you please explain HSCT I am unfamiliar with this and I too am scheduled for IVIG therapy, taking diazepam daily along with a host of other medications. It appears the treatment programs are very similar. Hers’s hoping they find a cure and soon! Lots of love, Lynn

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      • hi Lynn my friend
        i have had IVIg four times in 2013, and due back in hospital for another three rounds of IVIg three weeks apart over the next 9 weeks. then i will have plasma exchange again, as i did last year, whilst building a case for Ritaximub. my finally solution is the HSCT.

        the IVIg, is the less invasive of treatments, which works on a lot of people with SPS., given regularly. as you probably know, it is pooled plasma from thousands of donors, and is a screed blood product. from experience i have learnt to drink water until you feel like you cant drink any more, but you have to keep drinking. staying well hydrated will help with any side effects you my have i.e, drop in blood pressure, headache etc. please remember i am not a doctor and only sharing my personal experience as an SPS sufferer. i have to have my IVIg run at an extremely low rate i.e 36ml per hour and take antihistamines 20 mins before started to try and limit my side effects. unfortunately, IVIg isnt that effective for me. it still leaves me in bed , but at least it enables me to speak, helps control my spasms and keeps me off oxygen. so it works to a degree.
        the plasma exchange works much better for me, even gets me up on my feet and walking very short distances with my sticks instead of the wheelchair. but i have had instances where it has gone wrong, but that is the chance i was will to take, so i could spend quality time with my children .
        as none of the treatments have given me a good quality of life as i continue to be bed bond, my last resort is the HSCT. it is expensive and i need to travel abroad for the procedure, as the treatment is still in its trial stages for SPS. the HSCT is is an intense treatment programme that last 6 weeks, it certainly is a challenging process. basically your immune system is taken down to zero, strong doses of chemo is used, then the process of new stem cells regrow, similar to that of a baby. trials have showed so far that this treatment is a cure to this ghost we have. however, it has only been performed on three people in Canada, all successful. the first is now being start in Denver this month, along with a second being arranged. also the first is being performed in Russia in June. obviously this procedure carries risks of organ failure or even death, but i have to take that chance, as i am rapidly
        deteriorating.
        i am only 33 years old and i have three young children who need their mummy, so i will continue to fight and beat this ghost.
        i hope i have helped answer your questions sweetheart. i wish with all my heart that you gain some relief from the IVIg.
        much love and fairy hugs
        Nerri xxx

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      • Big Thanks To You Nerriberri! Still waiting on the phone call to arrange the first IVIg treatment. I dislike the waiting for this treatment or that treatment. I just want to be well! Anyway thank you again for the information you passed on I will drink lots of water and hope that helps me in my treatment. I try to put it in the back of my head it but it’s always there every time that phone rings I think is this the moment that will change my life? I am so grateful I found you. It is comforting to know there really are people out there willing to talk about this syndrome. Best wishes to you and your family and please keep me updated. I am up walking with aids of course but I am developing a tolerance to the diazapam and it’s getting harder to breath every day. Just a phone call and this could change. I can”t talk much at all either on account of the spasms.I just have to enjoy each day the best I can and I hope you keep in touch! Love Lynn

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      • Hi my sweet friend
        It sounds like we are both waiting for that same important phone call, so I really do understand how you feel my darling. I will always be here if you need me, but my apologies if my response is slow , where i get pretty ill and am unable to reply as quickly as i would like to 😦
        I was wondering, are you in touch with any SPS support groups? They have a wealth of knowledge and become such beautiful friends to chat to.
        Stiff Person Syndrome , is an open group created by Sam
        Stiff Person Syndrome – The Official UK and Ireland Support Group , this is a closed group
        Maybe being part of the SPS community, may be of help 🙂
        much love and fairy hugs
        Nerri xxx

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      • No apologies necessary! I just found a group here in the US! I was searching for a group when I found you! Now I have new friends here too. Thanks a whole bunch Nerriberri. There is a lot I have to learn about now and at least I have friends whole can relate to me now! I will be thinking of you every day. Best of luck and keep in touch! Much Love Lynn

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      • i am so glad i could help in some small way. its wonderful you are now part of a support group 🙂
        i wish you a beautiful future my sweet friend
        much love and fairy hugs
        Nerri xxx

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  12. Dear nerriberri I guess I should of be a little more specific, it is Cleveland Clinic in Cleveland Ohio, USA You can request a second opinion by just visiting their website and following the on site tools. You don’t even need to leave your bed to do it! At the least you can find out if there are any other options out there for you. Please keep in touch and I pray you find a medical, spiritual, or natural course of healing that will work for you! Lots of love coming your way! Lynn

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    • Thankyou so much for getting back to me Lynn, it is so very kind of you. I hope this information will help lead me in the right direction.
      Much love and fairy hugs
      Nerri xxx

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      • Dear Nerriberri, I am getting ready to have the IVIg therapy. Now that they have the symptoms somewhat under control they want to try and slow this monster down. I noticed in your post you have had this procedure. Can you tell me if it helped? Any information you could pass on to me would be great. Thinking of you every day and sending you positive thoughts! Please keep me updated on your progress and I will keep you posted on mine! Also what is HSCT? This is something I have not heard of yet. Even though we have never met I share your despair.and your hopes. Sending balloons of faith and hope and love your way! Lynn

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