The Fellowship of the Screwed

    • Anonymous
      September 3, 2010 at 6:51 pm

      I had GBS 8 years ago and every day since that time has been a serious struggle. I have had fatigue so bad that the only reason I can get out of bed to go to work is sheer force of will. If I don’t get up, each and every day and if I allow myself the luxury of taking off a fatigue day, then I seriously think I will never get back work again. Every single day of my life since 2002, I arise feeling like those days when I was in college and I would stay up partying all night long. And yet, somehow I still get up five days a week and go to work and I am still productive.

      The one consoling factor I have had is that I am not one of you. Yes, no matter how hard living with the ravages of GBS was, at least I didn’t have CIDP, because let’s face it, you guys are thoroughly screwed. Don’t get me wrong, I admire you all tremendously. It is just that I really do not understand why all of you aren’t sucking on the end of the gas pipe.

      Well in the last couple of months I have been losing feeling in my hands and feet. The fatigue has been crushing and the ringing in my ears sounds like a mini chain saw operating in the semi-circular canals in my ears. I finally went to the doctor because one of my sons stepped over my foot and tore a toenail off. I didn’t even feel it. A few days later, I was taking a grilling wok off the grill and I burned my hand so bad I heard the flesh sizzling but there was absolutely no pain. When I went to the doctor’s today he noticed that I actually tore several toenails in the last couple of months, and I absolutely have no idea when that happened. The doctor said they need to rule out a couple of other possibilities, but he says he would be surprised if I didn’t have CIDP. I got the nerve conductivity tests today and it seemed to be consistent with CIDP.


      So now it looks like I may be one of you, the Fellowship of the Screwed. I am so ………. I don’t know ……….. underwhelmed? I am not sure what to think.

      Could someone please pass me the gaspipe?

    • September 3, 2010 at 8:09 pm

      Ah, Yes. Many years ago we soldiers called it “The Order of the Green bannana”. πŸ˜€ πŸ˜€

    • Anonymous
      September 4, 2010 at 1:20 am

      When are you starting IVIG, Predisone or Plasma Exchange to help stop the progression ??
      I have greatly improved with IVIG and I was using a walker/forearm crutches but now can walk unaided for distances. I even stopped drooling when exhausted–not many got to see that thank goodness. :p

    • Anonymous
      September 5, 2010 at 8:47 am

      I completely understand the toenail thing. I have to use clippers or I will rip skin everytime.

      As to being par of the Fellowship of the screwed, You just take a treatment more often, and for a longer time period.

      Just think of it like “active residuals” and hope that treatments keep them there.

      Dick s

    • Anonymous
      September 5, 2010 at 11:18 am

      Hello Lee,
      I thought you’d like to hear from one of the “oldies” still hanging around the forum. How well I understand numbness. I have never ripped off toe nails because I put on ankle high boots (even in Florida summer) from the time I get up in the morning to the time I go to bed at night. I can still have days where the numbness is so severe I just draw in my breath waiting for it to get back to a syndrome numb. And you can get normal numb over syndrome numb. AHHH, fatigue can be so debilitating that it controls your life and I don’t always have the energy to push through that fatigue so I do things in spurts. FRUSTRATION is another thing that can control us but we just have to learn how to make a new me.

      BUT, I can look back. I am better then what I was and I am in a long remission.

    • Anonymous
      September 5, 2010 at 6:49 pm

      I believe we all have a moment when we want to say enough is enough. The pain becomes to much, the loneliness this disease can bring, the sadness as we can no longer do what was once a passion.
      I have moments where I feel normal. Glimpses of what it was like before this started. I had one today as I forced myself to the gym. As I sat down to do a set of arm curls I caught my reflection in the mirror. My arm glided through a perfect set of curls, the burn In my biceps as the blood rushed to the strained muscle, viens full, and a trickle of sweat rolled down my face. In that split second I was normal again, nothing else mattered, I was the guy I was before this curse stole my life.
      It is these brief moments I crave because they show me there is still the man deep down inside that made me different, unique, driven, passionate. It is these moments that take away the moments of self pity, the moments that make me want to give up, the pain, the sleepiness nights, the knowledge of what is to come.
      I read your post and feel your pain, your fear.
      I was asked the other day what my greatest fear is with this disease.
      It used to be not being able to walk, or the thought of losing control of my body completely, and well those things are still feared I have one that is greater. I am blessed with the most beautiful incredible woman in the world. She is sharing this journey with me, I love her with all my heart. As I lose feeling in my hands, as this disease takes that away I now know my greatest fear. It is to never feel her skin beneath my fingers, to not be able to detect the warmth, to not hold hands because the pain is to great. My greatest fear is to lose the one thing I love the most, the ability to touch, the sensation of it, the joy and electricity it can bring.
      I guess we all have fears, we all have moments, and with everything this disease brings, all the discomfort , all the loss, it is the simple sensation of touch I fear losing the most.

      Stay strong, do not give in, do not allow this curse to win, love everything we still have, the sensations of normal, and embrace them.
      Yes I have my gas pipe moments, but for now I will take hold of my girls hand and feel the warmth and love the sensation of touch while I still can.

    • Anonymous
      September 6, 2010 at 2:49 am

      Hey Lee, this walk of for 15 years has had its “suckey” times, more than I would want to admit! But in May, my first granddaughter was born- named Jaeden Anne -the same middle name of her mom and me! I am so glad that I didn’t give in to the tail pipe. I hope that you will be given something special to anticipate. Remember, us “olds” really care about you! Not many of us are on the forums anymore. I’m sending you big hugs from the beautiful N.W. And Gene would say “take care, be well”. You can be brave and fight the good fight, we’re all with you.:) I care about you to much to pass the pipe.:eek:

    • Anonymous
      September 6, 2010 at 12:16 pm

      I am 9 months post my GBS diagnosis, and still experiencing lots of “residules”. I so appreciate this forum – it has held me together many times. No tail pipes, please. Just the poositive, supportive thoughts of all you “oldies”. Sometime, too, I shall become an “oldie”, but until then I rely on your loving support. I, too, have numb feet, ringing in my ears, and very clumsy moments. Sometimes I can’t get my brain to connect, and I am left searching for a word (or how to spell it). I plow on, relying on the support and understanding of family, friends, and co-workers. I hope sometime this horror of GBS will be in my rearview mirror, and I, too will be a supportive “Oldie.” Until that time, let us all hang on, and rely on the support of the oldies, and give support to the newbies who are just starting this journey. Thanks to you all – – – –

    • Anonymous
      September 6, 2010 at 3:19 pm

      I guess I am an “Oldie”, been on this forum for over 8 years now, having come down with CIDP in 2002. I had one of the worst cases of CIDP that the Mayo in Rochester, MN (I live in northern MN) had ever seen, at my worst I couldn’t even sit up in a wheelchair, they had to put a plastic tray to lock me in. Couldn’t raise my arms, no use of my hands, & couldn’t even stand let alone walk. IVIG infusions & PE treatments did nothing for me, the 1,000 mg of solumedrol I was infused with bi-weekly let me pull knit clothing on, slide on & off a commode at my home, & eat once my food was cut up. Hospitalized for 4 months & sent home in this condition, prefaced by being told that there was nothing more they could do for me. I would be this way for 2 1/2 years. Did I have dark moments, of course I did, mostly for the burden I was putting on my family, the loss of my teaching job permanently, & the loss of all of my beloved sports.

      After my cytoxan infusions in 2003 my CIDP was arrested & I got enough back to walk with AFOs & a cane, get my driver’s license back, & the ability to care for myself again. I still need a wheelchair for distances, use a shower chair, & suffer the exhausting fatigue, plus severe pain in my feet & hands, but my life is far from over. My husband retired a few years ago & we do a lot, spent much of the summer at our small island lake cabin & also took 3 trips this summer to my daughter’s lake home in Brainerd, MN. My main sport now is water aerobics, which I do twice a week at the local YMCA, in lakes & in the ocean. I will never play tennis again, downhill ski, cross-country ski, skate or play hockey, etc. but we do still snowmobile. We spent 2 months down in Naples, FL last March-April & had a wonderful time.
      Next winter it will be Cape Coral, FL & Naples again.

      Tomorrow we are leaving for a 15 day road trip out west, hope to see Yellowstone, spend 4 days at a mountain cabin in Grand Lake, CO & some time visiting family in Boulder, CO. We will spend a few days in the Black Hills in SD. I am posting this for the “Newbies” to give them hope, that even if you don’t make the great recovery, life can still be good. I live with residuals daily, but after awhile it becomes your new norm. I have lived to see my 3 year old grandson born & my 7 month old granddaughter; Mayo had given me a year to live back in 2002, well I fooled them. I need a lot of rest & most of the time feel tired, but life is still good. Who wants to get this sick at age 48, or at any age? But it does happen & we have to live with it & make the most of what we have left.

    • Anonymous
      September 6, 2010 at 3:40 pm

      IMO Liz says it all…”we just have to learn how to make a new me.”

      I find it helps to go to sleep counting my blessings, instead of my troubles.
      I’ve noticed that things that bug me really drag me down if I think about them, but if I start thinking about all I have to enjoy and be thankful for, my mood changes and I actually fall asleep in a peaceful frame of mind.

      This year, I realized that my GBS-CIDP isn’t going away. And that knowledge forced me to rethink my priorities yet again, and how I spend my time, and the best part of each day when I have my maximum faculties and strength. I started simplifying and downsizing every room in my home, and outdoors in my yard and garden. It’s all a work in progress, but I have made many changes already that make life easier for me now. And I still have a few times per week when I have enough energy to do something want to do that helps me in my situation (15 minutes to an hour).

      Walking has been so painful and exhausting for me in the past 3 years; when I see those people downtown zipping along in their scooter, I really envy them. The red ones, the blue ones, the silver-gray ones, even one green one. Well, guess what??? Instead of feeling frustrated, I am starting to save up for one of my own. I’m going to get a medical scooter, and no more gruelling 2 mile walks for the mail and groceries. I’m going to post some ads in the seniors homes and downtown, and maybe someday I’ll have one too, and life will be easier and less painful.

      So it’s just a matter of learning how to make a new me, finding the answers to my needs, and working on that as best I can. I have been depressed many times, sometimes it seemed as if I’d be better off dead; but I have children and grandchildren I love and who love me, and there are others who are watching my life, so I ask the Lord for help and strength to live, and just go on with my life.

      We must not let ourselves be fooled by this illness and the damage it has caused our bodies and minds, and feel too bereaved…just as if we were going to be strong forever on this earth. We have been suddenly thrust into the same condition that elderly people live with every day; the only difference is that they have developed their health problems and crippling and pain gradually, but have also developed their coping and endurance strategies and self-disciplines.

      And no matter how bad it is, it could be worse.

    • Anonymous
      September 10, 2010 at 12:12 am

      [QUOTE=Lee Spurgeon]… It is just that I really do not understand why all of you aren’t sucking on the end of the gas pipe…
      Could someone please pass me the gaspipe?[/QUOTE]

      Good idea, Lee. I’ll attach a gas cylinder to my power chair I’ve been in for 2 years now, and suck on the hose to get periodic whiffs of nitrous oxyde and have some fun riding around the neighborhood.

      Come on Lee, I don’t feel screwed. It is what it is. This is my Buddhist philosophy. I am not religious and Buddhism is not, as many believe, a religion. It is no fun to be tied to my power chair all day, to be told by my neurologist it is as bad as it gets and it won’t get better ever. But it is what it is. Life is suffering but I am trying to accept it, live a good life, follow the precepts which are much broader than the 10 commandments, and let go of attachments. One of them is thinking I am screwed, why me, why did God (or a higher power) let this happen to me. It’s not fatalism at all, don’t get me wrong. It just is what it is.

      I won’t accept membership in The Fellowship of the Screwed.

      Take care

    • Anonymous
      September 10, 2010 at 9:13 pm


      In won’t accept membership in The Fellowship of the Screwed.

      Take care[/QUOTE]

      Thank you, Norb, well said!!!

      Feeling sorry for ourselves is not conducive to bettering our emotional or physical status. There are times moments one may pity themselves, but it’s a far cry from calling ourselves “Screwed”.

    • Anonymous
      September 11, 2010 at 12:09 pm

      So now it looks like I may be one of you, the Fellowship of the Screwed. I am so ………. I don’t know ……….. underwhelmed? I am not sure what to think.

      Could someone please pass me the gaspipe? [/QUOTE]

      Its just a question of time horizon, all people will end up in the same way.

      I try to ask myself what I can/want to do with the resources I have left.

      One little advantage: You donΒ΄t risk so much if you take a chance…

    • Anonymous
      September 11, 2010 at 1:04 pm

      I am an old-timer and remember Lee from the Old Board when he first became a member. If I remember correctly Lee’s Daughter also got GBS.

      I am now 81 and read the Forums; but have not written often since the Old Board went down. Trouble typing now also.

      What I wanted to say about the article Lee wrote is that in no way would he ever consider the gas pipe etc. That is just his way of writing and his dry sense of humour. Maybe if some of you could go back and read some of his old Posts; you would see how many times he helped people who were down in the dumps etc.

      Glad to see a few of the oldies on here. My wife and I went to the Symposium 2 yrs. ago when it was held in Chicago. Very enjoyable and we met some wonderful people.

    • Anonymous
      September 12, 2010 at 11:14 pm

      Find inspirations in those around you.

      Mine are my 4 children. I was diagnosed with CIDP during my last pregnancy, she was born with no residual effects of the treatments. I could only walk with a high wheel walker and assisted, puree food which was nasty to say the least and had the sensations of bugs crawling inder my skin 24-7

      The fact that I am typing this is a miracle in itself. My one daughter was born with hypopituatarism, at 4 she got Epilepsy and at 6 Hyperthophic Cardiomyopathy. She had a temporal lobectomy 2 years ago and is doing much better. She is a constant reminder to me that every little smile or I love you is a gift, onethat I treasure.

      I will fight this disease with everything I got.

      I am often in hospitals with sick children because of my daughter and I can tell you many of them have taught me a great deal over the years. No matter what life gives them they still smile.

      I hope everyone on this site finds peace within themselves.

    • September 13, 2010 at 1:09 pm

      Hey Swidy,

      I am with you. Same age and same time on old and new and same remembrance and sense of Lee. If you reach the end of the rope tie a knot and hang tight.

    • Anonymous
      September 13, 2010 at 8:11 pm

      Well, I just got back from the hospital and they ran every type of test they had, or so it seems. What they found out was that I have demyelinating polyneuropathy but it probably isn’t CIDP. I was cheered to hear that until the doctor said to me, “That is no reason to cheer, CIDP isn’t the worst thing in the world.” How special is that?

      It turns out I have a severe vitamin B-12 deficiency and I cannot take vitamin B-12 because it turns out I am allergic to the stuff. So they are going to suppress my immune system with IVIG and two days later give me a vitamin B-12 injection directly into my liver. I have to go through this treatment once a week for a couple of months, and then after that, I go through that at least once a month. Oh, and there are no guarantees that it will actually work and stop or reverse the polyneuropathy. So with that said, I would like to think of all of you as the lucky ones, and I am the one that is potentially more screwed than you are. Not that this has to be a competition…..

      God has a seriously wicked sense of humor, beings how I was praying that I didn’t have CIDP and he answered my prayers. I guess it is time to think of myself as being lucky because, according to my doctor, there are a few things out there that are even worse. I will just take his word for that. You really don’t have to prove that to me.

      Oh, and all of you have been just wonderful. I consider myself fortunate to be associated with you in any way. You are all a source of inspiration and are constantly amazing me.

      Oh, and the gas pipe thing was more or less a joke. Too many rely on me to get out of bed and go to work every day.


    • Anonymous
      September 13, 2010 at 11:14 pm

      So sorry to hear about your medical complications, Lee. Hope they get to the bottom of it and give you some effective treatment, so you can get back to your loved ones and bringing home the bacon.

      (The Lord never laughed at the ailments of the people He healed in the New Testament. He had compassion on people then and still does. This has not happened to you as a result of God’s sense of humour; we are marred by this illness and live in a marred world, but it was once created perfect.)

      I’ve been looking into getting a mobility scooter lately, but the cost was prohibitive. Then after doing my research, I found out that the pieces in the take-apart models are still too heavy for me to lift indoors and outdoors anyway. I was feeling sad and deprived till I read further and found out that I’d have to charge the batteries indoors and they give off lead fumes, and are also a fire hazard if the gasses ignite with sparks from old heaters and appliances. I realized then that the Lord has actually kept me healthier with my poverty, than I’d be without it.

      Then the idea came to me that when I have to haul water by cart every week (makes me sound like a horse), that I could just set 1 water jug in my rollator instead of the usual 2 jugs in the big cart (a gruelling experience), and still get the job done. So I don’t need a scooter after all, will save the money, and stop feeling sorry for myself when I see others with scooters. I’ll just be thinking of all the lead fumes, strained muscles from heavy lifting I’d have if the Lord had given me what I wanted. Actually, I prefer walking, so am going to struggle on with it, and put all that scooter-envy behind me.

    • Anonymous
      September 17, 2010 at 7:06 pm

      [B]Lee[/B], Hope the injection helps. Sure doesn’t sound like fun
      [B]D.U., [/B]batteries for my wheelchair are sealed, no chance for fumes – I charge them several times a week and i am still alive hahaha. just FYI in case you consider a scooter again

    • Anonymous
      September 17, 2010 at 8:51 pm

      I do try to keep a positive outlook on life but

      I do proudly wear my badge

      [B][SIZE=”5″][COLOR=”Red”]Fellowship of the screwed[/COLOR][/SIZE][/B]

    • Anonymous
      September 18, 2010 at 1:33 pm

      D.U., batteries for my wheelchair are sealed, no chance for fumes – I charge them several times a week and i am still alive hahaha. just FYI in case you consider a scooter again
      Thanks for the info you shared; I’m glad you’re still alive after charging your batteries several times a week, but do those lead fumes affect your brain?


      [B]I think we need a separate thread about medical equipment and mobility scooters.[/B]
      I’m still looking into getting a mobility scooter, but right now, I’m just sorting through the facts. The dealers here want at least 2 thousand for a heavy-duty model, even for used ones, and the private sales are chancy, though I’m presently checking into a used Pride Revo SC64.

      For instance, that manual says:
      ‘Do not freeze batteries’. :rolleyes:
      I live in Canada, and need to use it outdoors in winter during 20-40 below weather with windchill.

      ‘Do not charge a frozen battery or you risk explosion’. 😎
      Well, suppose I’ve just come back from the post office and it’s 30 below zero + windchill, and the battery is almost dead, what do I do about the battery???

      ‘Batteries give off lead fumes, and explosive gasses; and when charged indoors, sparks and heat sources may cause explosion’. :confused:
      Manual says it’s an OFF-BOARD battery charger, shows how to disassemble and charge it indoors (even though that isn’t safe), so where exactly is it safe to be charged?

      To add to the confusion, the store-dealer says that this scooter’s foam-filled wheels would have no traction on winter roads.

      (See what I mean?)

    • Anonymous
      September 18, 2010 at 4:59 pm

      it might be a pipe we suck on, but ah, it ain’t gas. πŸ˜‰

    • Anonymous
      September 18, 2010 at 5:12 pm

      It turns out I have a severe vitamin B-12 deficiency.

      I knew they was sumptin wrong with ya.
      Cause u was just too funny ta b normal
      I’m so sorry bro.

    • Anonymous
      September 20, 2010 at 7:32 pm

      Hello, I am 40 ish and living with cidp. I had gbs and was paralyzed from the chest down. was never told how much i could recover. live with parents but also lived in a nursing home for a year. then was determined to well by medicare and shipped back home to mom and dad. I am currently getting IVIG treatments and has given me more energy. Numbness in feet and hands is permenent. still tingle from chest down. I work part time and am currently driving. I belong to the Y. Outlook is not good. I visit my Neuro on wednesday. I hve a feeling he will stop the treatments. I dont know what to think if that happens. I want to believe i am getting some benefit.. I feel good when i get the treatments and really run down right before the treatment starts again. I get treatment on Mondays and tuesdays . That makes Sunday a real struggle. I too stuggle with fatigue. I am exhausted all the time but here is an example of my week: Monday Infusion from 7am until 2pm then out with a friend 6 pm dinner then some computer time then bed around 8pm Tuesday Infusion 7 am until 2 pm head therapy than poker with the ladies.Wednesday Work and the Y Thursday Work and the Y Friday Work Saturday 1-3 work&Dinner with a friend Sunday church, breakfast and hanging out with my mom usually running errands and shopping. I know it doesnt leave me much time to rest but my mom doesnt believe i need it she wants me to stay active. I also suffer from Bipolar and am overweight. I am exhausted all the time and have trouble thinking straight most of the time. I am grateful to have such an active life but I get so tired and not to mention the pain. I currently dont take any meds for the Cidp. Thanks for taking the time to read this it helps to get it out.
      Jo Jo

    • Anonymous
      September 25, 2010 at 12:11 am

      Jason, you are still too new to CIDP. I remember feeling the same way for a very long time.Then if one doesn’t get back to “normal,” eventually you begin to forget what that was even like. I can’t believe that I was still downhill skiing right before I got sick, used to remeber in dreams, but not anymore. When I see people running, I can’t imagine what that feels like (even though I was on the track team in 4 events in high school.) The new you becomes the new norm, it isn’t all bad. I am so used to this damaged body that unless I come on this forum, I rarely think about it anymore. I do need lots of rest though, but I am used to that as well.

    • Anonymous
      October 4, 2010 at 12:19 pm

      How do you not think about the disease or what it has done to you? I am 7 years into this and I miss walking in the woods I miss running I miss being able to stand without wobbling.
      Is it that we are to change our delight levels? The fatigue is overwhelming, the pain never ending, and those not the physical disability is what makes our lives screwed.
      I very much miss a day out with my wife of walking and shopping and just life.
      So I am happy you do not think about it but as I lose more and more it is pretty hard not too

    • Anonymous
      October 4, 2010 at 4:42 pm

      Maybe because my symtoms began the month of March 2002 & within a month I had deteriorated to nothing, could not even sit up in a wheelchair without them putting a huge plastic tray in front of me, could not use the call button for the nurse, or the phone or remote control; not even able to scratch in itch I had. The nurses had to turrn me every two hours in bed by putting pillows behind my back. If my leg slid off of the bed, it stayed there!

      My deterioration was quick & severe, I was total care. That is probably why at first I was dx with GBS, 8 weeks later it was changed to CIDP. No treatments made a difference: I had 14 Plaspheresis, 44 IVIG infusions, & weekly infusions of solumedrol, all this within the first 8 months. Still I was basically bedridden. When cytoxan finally arrested my CIDP in 2003, by the summer of 2004 I was able to finally walk again, albeit with a cane & AFOs. I got my driver’s license back in Feb 2005, much of the use of my hands back in the fall of 2004. It depends on where one is coming from, & I remember all too well what it was like to be total care for 4 months in the hospital in Mayo & then have my mother move in with us to take care of me at home for a year.

      I was athlete of the year in my high school class, was a great hockey & tennis player, loved ice skating, downhill skiing, taking long walks with hubbie, etc. But none of that is going to happen anymore, lost it all at 48. I tried bargaining with God, but to no avail. So the choice I made was that as long as I am on this earth I have to live in this body. I joined a water aerobics class at our local YMCA, we still snowmobile, but much slower now, we still get up to our cabin on a small island & I either live in the water or we cruise in the boat or fish. We did all of these things before I got sick, but I try to do them more often now, as we are no longer working. Today I joiuned a new club, just for more social networking. I am also in a Bible study group & a book club, as these are things I can still do.

      My husband was able to retire in 2007 & we have been able to take many mini-vactions & also long ones. Spent last March & April down in Naples, FL & just got back from a 15 day road trip out west, where we saw 6 national parks. I get very tired, need lots of rest & don’t always feel so good, but after 8 1/2 years none of that is new to me. I am enjoying being a grandmother to two small children & trying not to bring my family down about my CIDP. They all lived it, they probably remember it all as much as I do, but they are happy to still have a wife & mother around. I was the worst case of CIDP Mayo had ever seen & when they released me, they said what I had was basically like ALS & that I would die the same way. Does that explain at all why I have accepted my limitations?

      BTW Every day I would just love to take a long brisk walk with my husband, but that will never happen. In my mind I never forget what I am missing, but I am oh so grateful to have done it for so many years. My son was born paralyzed from the waist down (spina bifida) & never got a chance to experience all that I was able to experience, just another perspective…

    • October 10, 2010 at 2:54 pm

      How do you not think about the disease or what it has done to you? I am 7 years into this and I miss walking in the woods I miss running I miss being able to stand without wobbling.
      Is it that we are to change our delight levels? The fatigue is overwhelming, the pain never ending, and those not the physical disability is what makes our lives screwed.
      I very much miss a day out with my wife of walking and shopping and just life.
      So I am happy you do not think about it but as I lose more and more it is pretty hard not too[/QUOTE]
      yeah–im right there with you Dieno–how can anyone NOT think about it–I think EVERY single day of how this cidp **** has ruined my life. walking –which used to come so natural is now a chore, skiing, waterskiing hiking etc are all just dreams now, as a former track competiter, exercise instructor, military person, and coach of various kids sports this HAS taken away my life—to be honest i would have rather been hit in the head by a stray bullet than be slowly dying on the inside with cidp!!!! my only hope that there will be a cure for it soon or one of these treatments will eventually work.

    • Anonymous
      October 11, 2010 at 12:04 am

      I see so many others every day with a bad knee, a bad hip, a bad ankle, etc. Now these cannot compare to CIDP, but they do hinder one from skiing, running, taking long walks… I know, because back in 1998 a tow truck pulled out right in front of me (he had a stop sign), & I broke my left knee. It never did heal right, I always had shooting pains going up my leg & it was very weak. So at 45 I was already getting used to limited mobility. Look around you, so many are suffering with various ailments, some you cannot see…

      I am just trying to make you guys feel better. Of course CIDP sucks, I should know, as I probably had one of the worst cases this forum has ever seen. But trust me, there are much worse illnesses to have. Lori, have you considered arresting your CIDP with cytoxan infusions like I did? Cheap & usually only 6 monthly infusions are needed…

    • October 11, 2010 at 1:48 pm

      no i havent tried cytoxin–the only thing i have tried is ivig and am now coming off the prednisone ( which i dont think did anything), i did ivig for 1 year every 12 weeks–i did feel better after–especially after the first couple– i think 12 weeks apart was just too long–after a whole year we retested and my antibody level stayed the same. starting this week i am going to start having ivig every 6 weeks. I really hope this will work, my dr did mention pe also-i think she means after my 6 sessions of ivig every 6 weeks if that doesnt work–i’ll clarify when seeing her thurs. Thank you for your post though—guess i was having a prednisone moment– lol. did you have to go through all these things that im going through to get to the “big guns” like cytoxin?? because i would much rather skip all these hoops and go straight for the chemo. cytoxin etc if thats what it takes– i would rather be sick for while and then cured rather than waste so much time trying things that dont work. i can see the drs point–less invasive etc..but when your life is on hold trying all these things that dont work—cancer pts survive 9 or more mos of chemo-then life goes on….thats all we want for our disease too.

    • Anonymous
      October 11, 2010 at 3:48 pm

      If you read my longer post above on this thread, you will see that for 8 months, I did try weekly IVIG, plasma exchange & weekly solumedrol of 1,000 mg. Cytoxan was brought in when I wasn’t getting any better. It did arrest my CIDP & finally allow my nerves to heal, at least those not damged with axonal damage. I did take a very long walk today with my husband & the chocolate lab, the only difference is that I did take my powerchair. I can get up & walk through the leaves, but not for long distances. I think you should get IVIG every 4 weeks, the every 12 was ridiculous as a treatment. I remember all too well thos steroid moments, my family knew to stay far away from me on Tuesdays, LOL!

    • October 11, 2010 at 8:01 pm

      yes -i was thinking i would ask my dr when i go on thur what she thought about once a month for the ivig instead of every 6 weeks…did you have any respnse at all from the ivig? I was wondering if they only go to the next level of treatment when there is no response at all or if they step it up when things just seem the same as mine as been—thankfully no worse. I’ll go back and read your older posts now–i enjoy reading through them to see what’s worked for others—it’s amazing how much one can learn from here : )

    • Anonymous
      October 12, 2010 at 12:27 pm

      I hoped that cytoxan would be the cure for me. The more I have read the more it seems that it should stop the progression down but severely damaged nerves will not heal. For me that will mean continued use of walking aids and a wheelchair. I have some use still in my hands and hope that if we stop this I will regain that strength back. I know we are all too look on the brighter side of things, that we are still alive, still can somewhat function, but somedays I do feel screwed.

    • Anonymous
      October 12, 2010 at 1:07 pm

      CIDP can kiss my a**

      I’ll Keep taking punches,
      until their will grows tired,
      I will stare the sun down,
      until my eyes go blind.

      Pearl Jam


    • Anonymous
      November 6, 2010 at 10:51 am

      I had to make a comment. I think it is pretty cool how some of you cats are so upbeat. For me right now as I continue to spiral I don’t have a ton of happy thoughts. I guess the como of meeds, chemo, neurotic, prednasone, sumadrol, and plasma exchanges are taking their toll. Had my third lumbar puncture lastvweek, protien levelscare 4 x acceptable levels, combined with a skeletal survey showing shadows on my bones. The neurologist now believes the attacks are on the axiom nerve and this can be viral. I have been tested for hep c, diabetes, etc all clean. I was told yesterday that it is rare but I may have a tumor or osteoskelaretic myolenoma.
      Howvdoes one smile and say damn justba great day to be alive. I was told our Father puts nothing in our lives we can not handle. At this point I am getting close to disagreeing. I do feel screwed. Can no longer work, bathroom 10 times an hour and looking at wearing depends. Trust me I am not a cat who can pull off the adult diaper look!

    • November 6, 2010 at 11:08 pm

      Sorry to hear of all that you are going through dieno πŸ™ I hope they find something that works for you soon…….and dont feel bad about getting mad or “feeling screwed” i think you have every right to feel that way with all thats going on. Lori

    • Anonymous
      November 7, 2010 at 12:46 am

      hey man,
      I’ve been so low I have prayed to die. We all understand. You can either fight, or you can quit.
      I made a deal with the wife to fight for 10 years, because we saw some people on tv one day with cidp & GBS, 5 of them, and the longest anyone had it was 10 years.. The all had a normal walk to the stage.
      Many days the first 8 years I wish I hadn’ t made that deal. My life and hers was so miserable. I thought If I don’t do something I’m going to die soon anyway.. I found 2 people with cidp doing better than me. I went to their doctor, and have slowly went from nothing to walking short distance with a cane. I’m glad I didn’t give up, because I really enjoyed the time with my wife today. I loved the music. and I believe in God. Maybe one day I’ll be granted some mercy, if not in this life, the next. I got a second chance because I never gave up.. and my wife never says never..
      Tears make you feel better, and they help make room for the smiles.
      God Bless, be strong and keep the Faith.
      listen to music and comedy.. flow with it. you can get better, listen to your body, search for what makes it feel better…
      I’m actually looking forward to dying, but it will come soon enough, so there is really no need to hurry it up.. and If I wake up paralyzed tomorrow, your little ramble gona sound like a love letter compared to mine. πŸ˜‰ IT’s only been six months since I went from setting records to unable to push myself to a standing position and walk.. very unnerving.
      I’m improving daily and just had a dose of Rituxan yesterday.. Strength bump on the way…Did you know CIDP is the inverse of a roller coaster ride.. Going up is fun, going down sux.. RC going down is fun, going up sux. Graph it sometime… πŸ™‚

      I keep telling myself
      I’m Heaven bound.
      Jamey Johnson

    • Anonymous
      November 8, 2010 at 10:34 am

      Thanks. This week in am in to see a urologist as well as a oncologist to run some more tests.
      Only good news or bright side is i needed to lose 20 more lbs and these complications are making it happen!
      Take care all

    • Anonymous
      November 8, 2010 at 11:41 pm

      Of course you have a right to feel screwed, we all do, & you are still in a downward spiral & on so many treatments. Trust, me, my mind was in a very dark place for the first 2 1/2 years of this illness. Both GBS & CIDP are devestating illnesses to have, no one will argue with you on that one. Are you sure that there isn’t something else going on with you besides the CIDP, as you have so many symptoms, even with all of those treatments. We have had many others come on here through the years, stating that none of the treatments for CIDP are working, only to have them come back on & let us know that they were misdiagnosed. Some have had CMT, MS, ALS, or other illnesses & not CIDP. The bladder thing is new to me even at my very worst, that was never an issue; but then we can all be so different.

    • Anonymous
      November 9, 2010 at 9:42 am

      Pam. We have ruled out MS ALS and most other side complications. Spinal tap shows protien levels 4 x highest levels. My near is a specialist in ALS and says for sure no way.

      Thanks for the thoughts still digging.

    • Anonymous
      November 9, 2010 at 11:59 am

      Ric have they ruled out the muscle inflammatory things like polymyositis and inclusion body myositis? I can’t remember if you have had a muscle biopsy? I am sorry that things are so bad.

    • Anonymous
      November 13, 2010 at 1:16 am

      [QUOTE=soapy]CIDP can kiss my a**
      right on bro

    • November 15, 2010 at 6:48 am

      Hi Dieno,

      I had a very bad experience being almost paralyzed for 2 weeks in the US, last two weeks. I live in Brazil and went to the US for business. (I had GBS in 2006 and CIDP since).

      I know what you mean about going to work and all, because I feel the same way. But it was only after these 2 weeks in the US, thousands of miles away from home, alone, that it really struck me. For the first time I felt like “I can’t do this. I can’t walk. I can’t get to work or even stand up when I fall (fell over 3 times last 2 weeks)”.

      I’m not sure what the future holds for me (or you). We may get treatment and get better. For instance, when I resume my IVIG/Solumedrol treatment next week I hope I’ll get back to my ” old CIDP me”. But if this is the new “me” I’ll do even more research and learn more and more. Make sure I have tried all I can.
      If there is still no change, I’ll have a new life and learn what I’m capable of doing.

      I hope your condition will improve and you can find some comfort.

      Take care,

      Marcio Pocciotti