I’m new. I have CIDP and looking for freinds

    • Anonymous
      October 10, 2006 at 6:15 pm

      Is anyone out there? I’ve been hanging around the the postings like a lost pet looking for shelter. I have found myself scared and somewhat hopeless.
      I am a 40 something husband and father of four who, untill about two months ago was working, riding my mountian bike and enjoying my life. For about three years I have been seeing a neuroligist for weakness and numbness in my arms and leggs. They looked for MS through a spinal tap, but it was inconclusive (what ever that means). Though my conduction studies show nerve damage in legs and arms.
      On August 18, this year, my son and I cleaned up the yard and left to go get some lunch. When we returned home I couldn’t get out of the truck. My legs were so stiff they could barley move. I haven’t recoverd. At one point I needed two canes to get around, but my upper body and joints get so sore that I had to start using one.
      My neurologist diagnosed me with CIDP then reclassified it as (degenerative neuropathy).
      I have had three IVIG tratments and will get my next on OCT. 16th. So far, I don’t feel much better. I was told that 70% of people with CIDP respond to IVIG treatment.
      What does that mean? Will I get better. Will I be able to work, ski and ride my bike? or will it just stop me from gettting worse? Currantly I just sit around and watch my neighbors mow my lawn. MAN! I never thought I would miss mowing my lawn!

      I saw a posting for the “Tavern” and have not been able to find it again. Any sugggestions on how to get there? I stopped drinking 13 years ago but I feel like I could use an emotional drink!



    • Anonymous
      October 10, 2006 at 7:05 pm

      AIRdave, I was diagnosed 2 years ago with GBS. Now on my 2nd anniversary, if you want to call it that, I am spending a good part of my day-since I am unable, once again, to be in the gym teaching-reading postings.
      You’ll find a lot of information here. Some of us find a lot more here than we do from our Dr.s. With GBS/CIDP being so rare, there aren’t a lot of specialists in our area. But there is a lot of knowlege on this site.

      It comes up continually that many of us were very active individuals before this hit us. Makes me wonder.

      Sounds like you are doing what you need to do. Hang in there. The hardest part is sitting back when you aren’t used to taking things easy. YOu will find that attitude to be your biggest enemy. When your body says “slow down” you gotta do it.

      Hang in there, it is a slow process and always remember that things could be worse.


    • October 10, 2006 at 7:56 pm

      Welcome! You have found shelter 🙂

      It is so difficult asking for help. I cried when I had to ask for help with household chores…and even picking items off the grocery shelf and put it in the cart, opening jars even. I have always been a bit stubborn and felt I had to do it all myself or I was “weak”. Only a few weeks ago I was crying while doing dishes when it was too hard for me to scrub off some stuck on leftovers. I am healing…daily. We all are. It is scary, humiliating at times, very humbling. You are not alone, and you have plenty of friends here. Do not overdo anything, you will regret it tomorrow because your body will rebel and MAKE you rest. Little by little, and plenty of positive thinking and sheer will (plus medical help) will get you back on your bike and out mowing your own lawn 🙂

      Know you are with friends now!

    • Anonymous
      October 10, 2006 at 8:26 pm

      AirDave…..nope you are not alone…..there are many of us here that share your pain and emotional ups and downs. I am 43 and a father of 2 precious daughters. I was dx with GBS 16 months ago and moved the dx to CIDP this past January. I have had a total of 6 IVIG treatments and all I can say is it has helped me. I too walk with a cane and find fatigue to be my greatest nemisis.

      There are lots of folks, good decent folks here that can and will give you help. Drop in anytime and ask all the questions you would like or simply let some steam off. Hang in there….

      God Bless

    • Anonymous
      October 10, 2006 at 8:34 pm

      Some people return to normal, others just dont get worse a whole lot faster. Treament and results vary drastically. Find a good neurologist that will do every thing in his/her power to get you better. Have patience, and keep some faith. I went from bedridden to being able to play football and baseball with my son occasionally. There is hope, so dont lose it.

    • Anonymous
      October 10, 2006 at 8:42 pm

      Welcome Dave,

      Many kind souls in these forums to guide you and inspire you and calm your fears. I have been so guided, inspired and calmed. Hope you find that here too.

      And you can find “The Tavern” at Forums, Main Forum and under the thread for “The Tavern” Drinks are cheap and truly non-toxicating yet very uplifting.

    • Anonymous
      October 10, 2006 at 9:58 pm

      Welcome to the familt Airdave. the tavern is in the main forum thread-top of the list. if it isn’t right up in the top 10 posts then it would be in the 2 page. usually it is up front because there are soo many of us visiting the tavern on a daily basis!:) come on in for a cold one, its on me!:) you can ask as many questions as you have and rant and rave when you need to, we’ve been through it and know what you’re going through. take care.:)

    • Anonymous
      October 10, 2006 at 11:23 pm

      Dave, I know how you feel & you are not alone. Keep fighting the good fight & I will keep you in my prayers. There are alot of good people on these threads who know exactly what you are going through and can offer some good advice. For me just knowing I was not alone in my fight made all the difference in the world.
      God bless,

    • Anonymous
      October 11, 2006 at 1:37 am

      Hi. I am new here too. i just read your entry and felt i was reading my own words. i was trying to get up the nerve to start writing without crying.
      i have been reading for a few days now, scared out of my mine.
      i was diagnosed with MS 6 years ago and last week my new neurologist looked at me and said you have CIDP and handed me a piece of paper with this site listed on it.
      i am at the OMG state right now. I have never heard of this dx, but after reading all the entries i see that other people know exactly what i am feeling.
      My doctor did a nerve conduct study a couple weeks ago to compare it to the one i had done awhile back and said that my nerves are dying off in my legs. what exactly does that mean? will they come back? will i be bed ridden again? So many things go through my mind everyday it is hard to be in a happy mood. also, since the test i have been in constant pain. i wasn’t before. will this lighten up at all? I have been on Lyrica for months now and he told me to increase as much as i needed. how much before i know this drug might not be for me? also i am having to go in for weekly b12 shots.
      the best thing he did so far is connect me to this site!

    • Anonymous
      October 11, 2006 at 9:33 am

      I just wanted to add that the IVIG’s don’t “ALWAYS” make you feel better and stronger, another very important purpose is to try to “CONTROL” the progression of CIDP. We do have hope, if the progression can be controlled, we can start to heal. This is what happened with me and the IVIG’s, I rarely felt stronger, it was as though water was being dripped into me. I received infusions for three years, one day every two weeks. I AM HEALING NOW AND I HAVE THE POTENTIAL OF RISING UP FROM MY WHEELCHAIR AND BEING ALMOST AS GOOD AS NEW.

    • Anonymous
      October 11, 2006 at 12:44 pm

      Hello Airdave and Lisa also:

      I know how you feel. I am 44, father of two boys 14 and 9, with a wonderful wife. I was extremely fit and athletic at one point back in the day. I still proclaim that I am an expert snow skier, if only I could get back on the skis…..

      I don’t post a lot here on this site, but I empathize with your feelings.

      I was doing OK with the disability from CIDP for a while, as IVIG was slowing progression, but I got hammered very hard by an exacerbation nearly one year ago to today. I was unable to drive, could barely walk, had insane double vision, etc. for six months. Then, I slowly got back some strength, and my eyes started to slowly straighten more into alignment and now I am able to drive using hand controls. I am now however on disability. The hardest part of being severely disabled for me was adjusting to the reliance on others for so much – and, the self-shame of it all. I am now on social security disability (approved in full on first application), and also collecting from a private disability policy my wife and I purchased 15 years ago. I never dreamed I’d need it, but because of it, money is not a major worry. Being on disability was/is hard to come to grips with.

      I am getting past that now, and my outlook and self-image is improved. I am accepting now of the fact that I’ll probably never ski again, etc. The mental aspect of adjusting to a new reality is in some ways as challenging as the physical nature of the disease.

      I think that the fact that you were still pretty active prior to this August episode may bode well for getting back your strength, if you’re able to find an effective treatment that can nip this current exacerbation in the bud.

      Be aggressive pushing for alternatives or additions to IVIG, if you keep progressing. I had 20 rounds of plasma exchange during my big episode late last year, and it helped me eventually turn the corner. It was very grueling, but worth it. Also IV Solumedrol is used for some with success, or immunospressives, etc, even chemotherapy. Be ready to roll out the big guns if need be to get you back to a quality of life.

      I’m back on IVIG, and staying pretty stable for now.



    • Anonymous
      October 11, 2006 at 1:20 pm

      As I sit here and read your comments I am over run with emotion. This is not fun. Especially for a macho man like me. Ya know, I’ve never relied on anyone but my self. I’m a self made man and have always been able to carry the weight of the world on my back. My freinds and family call me Mr. Incredible. Mostly because I look like him (the older, heavier version), but I’ve always been mentaly and physically strong. I use to look at people with canes or limps or wheel chairs and judge. I would think “come on, get up! and get going!” Maybe this is my punnishment for being so judgemental? Anyway, it is what it is. I look forward to sitting for awhile as I have always been on the go. I know my family enjoys having me around more since I use to work 16 hrs a day. My montra was “work hard and play hard” now I just “sit hard!” But thats ok, It’s been a long time since I sat and took a deep breath and reflected on what is really important in this life.

      I’ll see you in the Tavern next time.

      Farmington Utah

      I cant get my spell check to work. But thats ok, I have time to figure it out.

    • Anonymous
      October 11, 2006 at 3:56 pm

      It does seem like a lot of us were very active before CIDP struck. I have had 4 1/2 years to reflect on what has happened to me, so I am a bit further on in the game. I raised a disabled son, who can walk minimally with Canadian crutches & AFOs, but primarily uses a wheelchair now for most activities (age 25.) I spent a lot of time with disabled people at various camps & sporting events, so no, I don’t think this is caused by your being judgmental in the past. It is just something that happened & now we have to deal with it.

      I had to go out on disability right away, as I was hit hard & fast. I missed my teaching job immensely, but knew I was too sick to ever go back. I was also a downhill skiier, living just 15 miles from the best ski lodge in the Midwest. My husband & I were also very active in cross-country skiing & belonged to an adult skating club. I had also been on a women’s tennis league for almost 20 years. All that is gone for me now, at too young of an age. I walk now with AFOs & a cane, but have looked for other things to do for recreation.

      I can still snowmobile (note I live in northern Minnesota,) but this year have chosen to go to a 2-up, so my husband & I can take turns driving when I get fatigued. I also plan on taking up ice-fishing again. This summer we went up to our summer cabin a lot, & I love swimming more than I ever did before. We also did a lot of crusing in the boat & fishing. My point is, that even though there are a lot of things I can no longer do, there are other things I can substitute. IVIG never worked for me, nor did steroids or PP, so I had to go the drastic route with cytoxan to wipe out my entire immune system. But life goes on…