Hi everyone, heres my story of my year with cidp

    • Anonymous
      October 16, 2007 at 9:13 pm

      Hello, I was diagnosed almost a year ago with cidp, after a misidagnosis of tennis elbow. I moved half way across NewZealand to start my new job, and all the while was slowly loosing use of my arms. After 4 days at my new job, I was in Hospital and on IVIG. that worked for a start, but after a few relapses they put me on methylpreg in december and in January this year had a hose in my neck for plasmatheresis. That was changed to a tunnel line in my chest in Feb.

      I had the usual stuff, fine for awhile, tapered off treatments and steroids, then a relpase. The last time was 4 months ago and I was as low as I could be. It started off as an infection in my line and the medical staff didnt believe me when i said I couldnt use my arm. I was left to sit for 30 minutes in a toilet waiting for someone to help me stand.
      I couldnt walk very well so had physio also. Its awful being unable to stand up unaided or touch my face.The small things that are so hard to do kill me a little bit inside.

      Ive been good for the past 4 months, having plasmatheresis every 2nd week. Ive even been running and biking to get back into shape. Life was normal (as much as it can be with a hose in your chest and daily drugs) I ahve even been working and trying to be normal.

      I had the treatment yesterday and the line has had it. 8 months is aparantely quite good. and low and behold for the past few days i have some tingling in my arms and they feel hot.My left arm feels heavy and I am tired.

      Im terrified im relapsing and dont want to be back in hospital needing help to feed myself, wipe my bum and wash.

      I keep thinking why me, I thought I had my share of lifes kicks to the head. Im only 28 enjoy playing guitar, biking, mountian climbing, yet theres times I cannot even brush my teeth. its not fair and hope it goes away forever and i can be normal. But as others here can agree. Normal is not what it use to be anymore. I just want to be able to live my life quietly, travel and have a family one day. this thing does go away right????

    • Anonymous
      October 16, 2007 at 10:47 pm

      Hello, Darcy. I was just diagnoised with CIDP in June after being originally diagnoised with GBS in April. I have had three relaspes since I was diagnoised. Like you I had IVIG (15 treatments) I got a little better each time but not where my neuro thoght I should be even with 8 weeks of Physical Theraphy. In Aug I went back into the hospital another 15 day stay, this time I had 7 Plasma Exchange Theraphies with 4 out patient ones as well. I have an appointment with my neuro tomorrow to discuss the next steps. I am still on 15 mg of prednisone which I hope o get off soon. I also take 150 mg (50 3x a day) of Imuran. Hopefully this will help. Like you I am so afraid of relasping–my last PE treatment was last week. I will not have one this week and in the back of my mind the fear is there that I will relaspe. I know what it is like not being able to do all of the things ou used to do in the past. I can no longer drive so I am a virtulal prisoner in my own home unless someone comes to get me (I had to move back home with my mom who no longer drives). If you are starting to have symptoms of a relaspe please contact your doctor ASAP it might be nothing or you might be able to stop it before it gets too bad. I am with you–I want my old life back or maybe a life where I am somewhat independent heck I am not even 40 yet there are so many things I want to do. Like you I hope it does get better or that they find a cure for this disease. Good luck

    • Anonymous
      October 16, 2007 at 11:53 pm

      thanks for your reply. ive been doiung tests all day. i know if i cant crush a polysterine cup im done for. but so far so good. I talked to the lady who does my plasma theresis and my new neuro doc and Im getting the line out on friday, so im quiet happy about that.

      Ive been advised it may just be a minor inflamation that i may encounter from time to time. I took my steroids and they are kicking in so feeling ok. just need a good sleep to regain some energy.

      i know all about being a prisioner in the house, not just that but also in my own body. i had to be alone all day and my girlfriend had to put out drinks in places i could reach with my head. and once i sat down , couldnt get up so spent hours in a computer chair wheeling around..

      Im just lucky as health care in New Zealand is paid for by the government. Ive read about some in America who if they cant pay have it bad.. and im very fortunate my lungs and face are not affected..

    • Anonymous
      October 17, 2007 at 12:50 am

      Hi MJ and Darcy,
      I also have been battleing this thing called gbs/cidp. It all started this april and just keeps on going. My dr was leaning more towards cidp but know he feels that it is not following normal cidp patterns. Well everybodies stories sound so much like what is going on with me.
      I have had 11 IVIG and at first seemed to respond well. The last two I did not think I felt a thing. I refused to stake oral steroids bc of the side effects and family history for bone and eyesight issues. So i opted for cellcept even though we will not know if it is effective for 4-6 months ….just Great!!!!
      My dr also added a 1g Solumedrol with my IVIg. I had a treatment on Monday so right now I am on a steroid buzz.
      I have basically been in bed for 6mths just no strength. I can make it to the bathroom. I have not driven in 6mths. Forgot what a grocery store looks like. the only time outside the house is to a doctors appt.
      The next step maybe pp but I am relunctant. So I have 3 other consults set up for Oct. Nov. and Dec. The Dec one is at the med school in dallas tx. Another forum member was diagnosed there with CIDP in 1996. She said they were great. I guess i keep relapsing I don’t feel like i have gotten well enough to relapse.
      To top all of this we have no insurance so it has been all cash. The infusion company has given me a discount on the IVIG. I have quite a tab.

      So sorry for the ramble. Tell me the truth what is pp really like?
      And I can so relate to not going anywhere. A prisoner in my own house.
      My husbnad works from home and my 22yrold son lives with us so I have company. My sister in law brings the 2yo niece and 4yo nephew. They are fun to play with. My friend comes over once a week with a meal and does laundry for us.
      It is all nice but i want to do my own laundry. Can you believe that?
      Everyone here says hang on it does get better. Be patient.
      I want my old life back. I am sure fighting finding my new normal.
      I am 43 and want to do somuch more in my life than drs appts and treatments. it is amazing how independent we are. I also did not realize how picky i am. i want things just so well it becomes quite stessful when the hubby cannot get it just right.
      Lots of lessons i was not prepared to learn since this crappy disease had to invade our lives. I write like i talk alot. Thanks for the patience and listening to my babble.
      Hugs from Texas,

    • Anonymous
      October 17, 2007 at 6:49 pm

      yep health care here is scary. 😮
      got back from my neuro today–said I was doing well–at least my legs and forearm strength. my hands are not as strong as he wants them to be so I will have another 4 PE for now. Hopefully you will not relaspe and only get stronger!
      Good luck!

    • Anonymous
      October 17, 2007 at 11:45 pm

      Hey Darcy,

      I know exactly how you feel! I got diagnosed with GBS in 2004 and then it turned into CIDP in 2006. After three treatments of IVIg I was doing very well…for having CIDP that is. I still had the cramps and the pain but I could get along just fine. I am going to college to become a teacher and I was managing my full schedule just fine. Then of course there has to be a relapse. It really sucks. I’m in my relapse now too.

      For me the fatigue is the worst. Can be fatigued if you want to do anything productive right? But what made me feel better is that I realized that it’s just a relapse, which means that some time soon I will pull through it and I will get better. It may happen again some time in the future but I’ll come out of it again. Hope is the best way I get through, and talking to these very nice and helpful people here on the fourm. I hope that you feel better real soon and you get to keep doing all those out door activities you like so much.

      I know it sucks to be so young and be sick like this. I’m only in my twenties too – 24 so I feel your pain! Feel better and keep hope alive!


    • Anonymous
      October 18, 2007 at 1:58 am

      Hello Darcy,
      I know how you feel and I did the same thing. I have had this for years now but you will get better and stronger then go backwards again. It is one viscious cycle for me. Believe it or not this has made me a better person. I don’t take anything for granted anymore and try to live life to the fullest. Depression is terrible but you will defeat it. Just keep your chin up and remember where you come from and how far you have come. That is what I do. Take care.

    • Anonymous
      October 18, 2007 at 2:30 pm

      Hi y’all,(yes Valerie, I too live in Texas) I have had this horrible, debilitating, disease called CIDP since 2002. I was misdiagnosed for the first year so without any treatment I went downhill fast. But I also came out pretty quickly. A year to get into bed and a year to get out. Now if I could just walk again. I do find on a walker but I’m not yet ready for a cane. Fighting depression is probably the hardest thing for me, even on an antidepressant. But I know for me the depression is what we’ll put me backwards. For most of the week I am alone also, my husband is gone from eight in the morning until around 10 or 11 at night. Right now he’s getting his motorcycle ready for the big rally in Galveston next month. He is part owner of a motorcycle shop. So long hours are expected this time of the year. On Tuesdays and Thursdays my friend comes and gets me and we hang out together for a couple hours on Tuesday and Thursdays is the time I go World Ventures training meetings. So now I do have something to do during the day. I am a representative for World Ventures and it has really been a godsend for me. Because of the discount I get when I travel I am able to get out a little bit more. I got really brave in August and went to a health spa. I was there for two weeks and had a ball. I have a little travel scooter that only weighs 50 some odd pounds. Take the battery off and only weighs 20 pounds. So it was great for traveling. I spent time in the pool, in the Jacuzzi, one spa treatment a day, like a facial or a massage and the food was wonderful. It did a lot for my confidence as I went by myself. The people at the spa were wonderful if I needed help they were right there. I learned that I can do some things on my own. So when I start getting depressed I just think about my trip or I think about the trip coming up next month. I am not ready to give up yet. I may not walk now have the strength to even open a soda can, but I can do many things that a year or so ago I could not do. So I think the best thing that I can say to anyone that has CIDP is just to think about what you can do and don’t spend so much time morning what we can’t. And I need to take my own advice. Love you all, Vicki

    • Anonymous
      November 2, 2007 at 4:49 am

      depression hits fast for me. Im well for so long.. maybe 80% of what i was pre cidp, but if im 75% i get scared and depressed, cant concentrate at work and all i can do is think about my arms etc…

      Im planning on a holiday somewhere warm next year. not sure where as I dont want to go somewhere, relpase and be stuck.. time will tell.. that and the cat would not be happy if i ditched her for too long

    • Anonymous
      November 3, 2007 at 10:25 pm

      Hi Ya’ll 2.

      I agree with Vicki, i find myself only thinking about the things i can do now. I do miss some of things i used to do. I would love to be at Texas Motor Speedway right now with my family and friends but i am at home getting alot of stuff done that i have been wanting to do with no one here.
      I do have “stressful days” and it is ok to get depressed and cry, i just go to my room and shut the door, have myself a good cry and then a really good nap, come out of my room and feel better. Everyone is always happy to see me come out of my room, i always get hugs and smiles!!!
      I tell myself i am lucky even with CIDP. Things could always be worse right?!
      One day at a time!!!!!

    • Anonymous
      November 5, 2007 at 4:09 am

      Hi Darcy, (and all the above on this thread)
      Am new to this so please bear with me.
      Basically just wanted to say Hi to Darcy, I did send you a PM couple days ago but not sure if you got it. Anyway as you are a fellow Kiwi ws wondering if you had been in touch with the National GBS / CIDP support group?? Jenny seems very efficient and helpful!
      Quick run down on my history is very fit busy mother of 3 ( 5, 5 and 2.5 years) and very part time icu and heamo dialysis nurse. Following increased training for triathlon in March, developed Mastitis (recently finished b/feeding) was treated immediately, recovered ok, as recovering noticed R)shoulder was feeling weak with reduced range of motion. was thought ? sports injury from all triathlon training and given physio and then had 2 cortisone injections to relieve intense pain especially nocturnal. This did help the pain. Also had usual flu shot around this time. Has study day at work and discovered other arm increasing weaknes, couldnt hold coffee cup etc and at lunch legs were like jelly, that night all 4 limbs worse. Next am son had to dress me and feed other kids etc. Walking to school pushing pram legs gave way crossing road and the rest pretty much history. Had already booked to See doc as new i ws not tooo crisp, had lost arm and leg reflexes and hospital LP showed the high protein etc. Got weeks worth of ivig with ok result and discharged home ater 2 wks (1 week unvented in icu). That was end may. In a nut shell since then have continually relapsed into full paralysis, could only lift my head. Nurses did all my cares, turned me, fed, washed etc. Longest i have been home since first admision is 3 weeks then boom. Neuro seems great, has widely consulted and have now been on for the last 6 weeks Azathiaprine (Imran) 50mg 3 times a day, Iv Methyl prednisone 500mg on Mondays also ivig Mondays and ivig Fridays. (Have tried the other therapy’s including 1 x weekly ivig, then tried 2 x wkly ivig, then o pred plus 2 x wkly ivig etc) Been home nearly 2 weeks but am doing well. Have just started driving again, can hug my children, lift the youngest onto the toilet, shower, feed and dress myself and my children!!!!!!!!!! Got such a thril to hang out washing and to unpack the groceries, although didnt quite make it round the supermarket yet. I am on sick leave, we have had to employ a nanny, our bathroom is being modified and electric wheelchair is on the way. Maybe by the time it arrives i wont need it!!! Have just started walking well, not on strait legs with lock knees and hip, and can manage quite a bit without arm crutches. Am looking forward to starting back at regular physio in the gym, she currently is coming to my home, but with such good progress will be in her gym in no time.
      Hang in there, as one of the others said, you never have to look far to see others worse off and heh theres always tomorrow. My most supportive thought for myself when the crap was really hitting the fan ws ‘ lest its not 1 of my kids dealing with this” (sorry to all of you Kevies mum etc , that wont seem a fair comment at all and i admire you all so much) i got strength knowing id rather deal with this **** than see my children struggling and knowing there ws little for me to do.
      Cricky what a book, guess you can tell i had the methyl pred today huh. neva mind, all the best to you all and look forward to reading your news.
      Kia kaha
      (Napier, NZ)