my father is paralysed neck down.

    • March 18, 2015 at 2:40 pm

      hello everyone, i’m so happy that i’ve stumbled across this website, we have been suffering as a family for 3 years now and hope is all i have to depend on.

      my father was diagnosed with CIDP/GBS 5 years ago. 2 years into it doctors were bewildered with my fathers condition and reconsidered the diagnosis, throughout the 2 years different doctors took turns at treatments which that they decided to give him. he was first given a lot of IVIG cycles, then 7 rounds of CYCLOPHOSPHAMIDE and right after he became bed bound. luckily we met his current doctor three years ago and he confirmed that my father has CIDP, he put him on 3 cycles of plasmapheresis (45 plasma exchanges in total over a period of 9 months with breaks in between) and prednisolone, he is on a ventilator machine due to the weakening of his diaphragm.

      today, my father is bed bound, he is paralysed neck down, i am his living and breathing arms and legs, i feed him, wash him, put him to bed and feed him. i’m on this forum because i know someone out there can relate, will my father ever walk again? will he ever be able to use his arms at least?

      i really hope that someone responds and shares their story, here in the UK cidp is quite rare

      many thanks

    • GH
      March 18, 2015 at 5:33 pm

      Unfortunately, the prognosis probably poor, but his neurologist must give the authoritative medical opinion. Generally, earlier treatment leads to better recovery. Even with early treatment, there is a great deal of variation in these neuropathies. Maximum recovery is usually reachd in from one to three years. But one must always hope if there is any possibility. Have there been any signs of improvement since starting plasma exchange?

      I was paralyzed below the neck for a few weeks, and a paraplegic for a few months. I was given plasma exchange after the initial IvIg treatments seemed not to help. I started to respond after a few PE treatments and was then switched to drugs. I was nearly fully recovered after a couple of years.

      • March 19, 2015 at 8:00 am

        after my dad finished his plasma exchange, he immediately felt better, clean inside, energetic but lacked the power to be able to stand and use his arms. its been two years since he last had plasma exchange, and i will be meeting with his doctor next month to discuss a new treatment option of plasma exchange followed by IVIG and drugs. I’m hoping to see any changes this time. I’m quite desperate, my dad was so fit and energetic extremely healthy and powerful and now he is helpless. it breaks my heart when he talks about his childhood and it hurts more when i hear him speaking about him future plans of travelling and living life correctly if he gets another chance to.

        im so sorry to know of that mcp… i can really relate, i know its my dad who has the condition but somehow we feel the pain too. from experience and after battling the case with so many doctors i suggest that you see your doctor straight away, tell him that you want plasma exchange instead of IVIG, plasma exchange is much more effective and will stop it just in time. I came across this process two years ago and i when i spoke to the 3rd doctor about it he put us off it saying that ‘its a messy procedure’ and it absolutely isn’t. please consider plasma exchange, I’m only saying this because we are sure of the results, they haven’t really helped dad because its too late but I’m pretty sure they’ll help you.

        my dad is wondering what sort of pain do you feel?

        don’t let it get it to you too much, i know its easier said than done, sometimes it hits me in the face and i say to myself ‘oh my god, my dad is actually bed bound!’ but I’m numb inside and out now. that is the only way i get to deal with it, but it will get better i promise, just stay hopeful and positive and always look out for the positives in the negatives, and have faith! faith is not knowing that god can but that god will.

        keep me updated and let me know how it goes. as for my dad I’m going to meet with his doctor and workout a new plan of treatment, I’m not giving up just yet!

        stay hopeful, stay positive! 🙂

    • mcp
      March 18, 2015 at 5:37 pm

      I was almost that bad; started Nov 2013… I was hospitalized Dec 27 after two ER visits and 2 dr visits, the last three visits in wheelchair. I was an avid work out person; almost every day… no red meat, health nut. I did have a bad flu shot in 1995 that made me sick in bed for two weeks; other than that for the last 30 years I had been very healthy. Don’t even get colds. I was sent home from hospital Jan 3 with walker, and went downhill slowly. My husband called the drs office/hosp everyday for three weeks, they seen me again, and by then I could only move my head and neck and finger s little. I was sent home from rehab Feb 3rd; bed ridden, no hosp bed at home. My husband took good care of me. We finally got IVIGs approved in March and April my thigh came back – I was able to sit up and use my arms better. No more strength has come back noticeably, buy probably slowly. It’s been almost a year since any significant improvement. I can’t stand up; feet are extremely painful to touch; still in bunny boots. Had spinal tap and two EMGs; positive results for CIDP. I am trying to be happy from my bed, and use wheel chair … well not really, just to go to PT, three times a week. I am accepting and not depressed, so that is a plus. I’m trying my best. But Wow.

    • jk
      March 19, 2015 at 8:10 pm

      hiba24, So sorry to read this news about your father. I noticed you said “here in the uk cidp is quite rare.” There is a support group in the UK, maybe you know of it.

      do not let the ‘gain’ discourage you. It seems to stand for Guillain-Barré Associated Inflammatory Neuropathies

      It is certainly discouraging to be in the minority and get the disease, even worse to respond so poorly or not at all. Some studies suggest that some patients still have severe disability (unable to walk) or treatment dependent relapses no matter which treatment regimen they are given.

      I hope you find a treatment program that works for your father.

    • May 8, 2015 at 2:38 pm

      my partner was the same way, and ended up coding and being placed on a ventilator. Didn’t respond to ivig or Plasma Exchange.

      The neurologist tried Rituxan, 375mg once a week * 4 weeks. Today, is moving, walking, talking… alive.

      It is worth a try.

      • May 12, 2015 at 12:34 pm

        hello tperri

        you have no idea how hopeful this makes me, our neurologist did mention a rituxumab but said he didn’t want to give it to dad straight away given that he has already taken cyclophosphamide (another form of chemotherapy)

        if you don’t mind i have a few questions,

        was your partner bed ridden? if so how long was he bed ridden before he started taking rituxan and how bad was the damage… i only ask because if he was actually ask bad as my father is then we maybe very close to reaching the end of the tunnel

    • May 12, 2015 at 12:48 pm

      My partner was completely bed ridden and paralyzed up to the neck, including vocal chords. On a trach vent, lungs also were paralyzed partially and she went into respiratory arrest one night. After 50 minutes of CPR and 3 resuscitations, they brought her back. At that point I asked the neurologist for anything else, because she failed IVIG, PE and steroids.

      She got the Rituxan, and because of her conditions, he was careful and adminisetred 375mg once a week for four weeks. She started to show some movement within a day of receiving the Rituxan, however one does not benefit fully from the infusion for 4 – 6 weeks.

      She is not on a 6 months maintenance schedule and is walking, cooking, cleaning … and alive.

    • May 17, 2015 at 12:35 pm

      I’m so sorry to hear about your Father but I am right there with you. My Mother is the very same. Only given the diagnosis three months ago, but shown symptoms for years. Now in the hospital for second time, paralyzed neck down, she is 77 years old. My Sister and I are struggling. This is rare and we do not want to give up hope but are hearing there may be damage to the nerves due to time prior to diagnosis. What do we do? How do we take care of her properly and work and take care of our own families? She and Dad want to live at home, Dad is so fragile himself. Doc Tried: Steroids: She reacted poorly, IVIG, she had bad side effects. I do hear you can pre-medicate? now doing a “round” 5 days maybe more of Plasma Pharesis. They “say” some improvement? “a pump of her foot”. Am I to get excited about that? If yes, please tell me. Also, does anyone know if CIDP affects the speech? Mom’s speech has been affected, can only string together three words on a good day. I believe it is the diaphragm affected. I am with you. I feel like we are kindred spirits. UK/USA, we are in the same situation, and I hear CIDP is rare no matter, especially to the extent our parents have it. When someone asks, I say we are hopeful. Hang in there my new friend, lets stay hopeful! Can someone with more knowledge keep us hopeful please?

    • May 18, 2015 at 8:28 am

      Im so sorry about your mother.

      i understand and feel your struggle, the only way i personally manage to take care of my own father is by sacrificing many things that came my way. luckily i have 3 siblings, they are all married but work around my dad’s comfort, they have families and children, my two brothers come in the morning to help me wash him and my sister takes over on weekends, i’m homebound i allow myself a break once a week but my dad requires 24/7 care so leaving his side is not an option for me. with you it can be exactly the same, i suggest you do as they wish, let them live together and make arrangements with you sister where you swap shifts arounds, you do mondays she does tuesdays and so on. but before you do any of that you need to accept it all, i’ve learnt the hard way that pretending like its not happening is not going to help stay strong, i had to absorb it all in and accept that my dad is bed bound and accept the fact that he needs support even in the tiniest details,only when i accepted things i managed to fit my life around his.

      don’t give up hope, once you do you end up like i sometimes do, curled up on the floor crying my heart out. it is so hard! hope is all we have, even if it ends the way it is we need to stay hopeful, think about doing part time work so you can look after your mum properly, you can’t forget yourself too.

      as for the pump in the foot, when my dad did his plasma exchange his toes started to wiggle and he is picking up light strength everyday, I’m not sure that cider affects the speech, i don’t actually think it does, you might want to look at a different diagnosis?

      we only have each other, yes our loved ones are affected by cidp but we suffer as well, i’m here for you to pick you up if you need anything, this is our 4th year with dad so I’m kind of getting used to it..where do you live if you don’t mind me asking? i only ask because in the uk we have a government scheme that helps people caring for sick parents or members of family

      let me know and i’ll explain it all to you

    • May 18, 2015 at 9:53 am

      The paralyzation from CIDP can most certainly affect speech. The vocal chords can also be paralyzed, along with the respiratory system.

      I don’t want to be the bearer of bad news, but this is a very critical time foe the neurologist to find something to help.

      As I advised above, when the standard treatments are not effective, it is time to look at chemo. Rituxan would be first. That targets the B cells. If those are the “sick” cells, the Rituxan eliminates that part of the cell.

      If that does not work, them you need to look at targeting the T cells, and that chemo drug starts with a C… I forgot off the top of my head how to spell it, so I am not going to try.

      Eventual respiratory failure is responsible for many of the CIDP patients our neurologist has treated (over the past 25 years).

      Now is the time to fight for her life; you don’t have much time.

    • June 4, 2015 at 7:34 pm

      I was a whining garden slug with CIDP, walking was out of the question, arms could use the TV remote with effort. When I increased the IvIgG to 240 grams each month, I reverted back to my old wonderful self. I did have to leg-wrestle my neuro to get the IgG increase.