I’m getting scared …

    • Anonymous
      October 22, 2011 at 9:12 am

      I’ve had low-grade PN for about 15 years that has been upgraded, as it were, to CIDP. About six months ago, it started getting worse, my right foot especially, more numbness, more muscle atrophy, etc. about 3 months ago, i went to a new neurologist who said if he’d seen me when i was originally diagnosed, he’d have tried me out w/ ivig right away. too late for that. so .. . he wants me to do ivig. but … he’s in ny and i’m in ri and i had to get a ri neurologist to co-sign the order. that’s taken two months — and i’m due to start ivig next wednesday.

      but in the past two weeks, my right food has taken a dramatic turn for the worse. two weeks ago, i could tap that foot *easily*; as of two days ago, i can’t tap it at all. not at all. it also feels about 15 degrees colder than my left foot, and it’s getting colder by the day. Plus, at night, laying in bed, it feels like i have worms in my legs.

      i’m a surfer. two weeks ago, i could stand on my surfboard. today, i fell walking to the water; then, out in the surf, when i tried to stand up, i couldn’t really move my right foot/leg back in order to stand, and i fell. finally, i got up, but then i found that i couldn’t move my right foot. it just wouldn’t freaking move. after a few more attempts, i paddled in, got in my car, drove to a deserted parking lot, and started bawling my eyes out. imagine you’re actively, deeply, desperately in love with someone — that’s surfing to me — and suddenly that someone is ripped out of your life — that’s what i fear is going to happen.

      two weeks ago, i never tripped on stairs. yesterday, i went right on my ass. then i got my right foot caught in my left pant leg — how is that even possible? — and started to go over.

      this seems to be happening too fast.

      what’s new in my life that could be a triggering factor? on doctor’s orders, i stopped drinking two weeks ago. that’s about it.

      hopefully ivig will do me some good. but right now i’m just freaking the heck out.

      that’s all. i just wanted to get that stuff off my chest. my girlfriend has parkinson’s, so i generally try to keep my own relatively minor woes to myself.

    • Anonymous
      October 22, 2011 at 7:00 pm

      I’m so sorry to hear what you are going through. I can say it because I did the same thing. The moment I was given the stamped CIDP dx, upgraded from PN, I went through a mourning period. I mourned the person I used to be. That endless energy that I had just 3 years prior, was something I knew I would kiss goodbye. That made every sad and angry. I think I went through all of the stages of mourning and loss. You know, denial, anger……… I’m still not sure I have grasped excepting it yet. Just when I think I have, my legs give out, I trip, I drop a glass because my strength is gone, and sadness returns. And it is sadness, not pity. I’m sad because I can no longer be the mom, wife or person I once was proud of. I used to fight for others, cancer awareness, jobs for the people, now it’s a struggle to get out of bed.
      I’m sorry I am not telling you that it will all be ok because it is a long road to recovery. It’s a disease of 3 steps forward, 2 leaps back. The key is to have a good, no, great doctor as your advocate. If you are not satisfied, go to another. I kept getting worse over the 5 years I was told it was PN, I went through 18 neurologist until I found the one that agreed to treat me with IVIG. He told me that if my NCV’s continued declining as they were, I would have been in a wheelchair within the next 12 months. So he started treating me. I had a 5 day, inpatient loading dose and felt awful for a week after I was released. Then on the 8th day after my treatment, it was like the cobwebs were lifting from my mind and someone had put oil on my body like the tin man. I felt fantastic! And it only got better for the next week. Within the next few weeks I was back in the hospital for another 5 day treatment. It took a while to get the rhythm of the treatment that was right for me. It took 2 years. It’s frustrating, it’s scary, it’s the unknown.
      You have every right to be scared. Just know that IVIG is the right thing to do. So you are taking the steps to slow, even stop the damage. I was on this website all the time reading stories, asking questions, crying and getting advice. Then I found myself giving advice. Eventually, I found myself feeling better, stronger, happier. This forum is a tool to vent, help and seek advice. You are surrounded by wonderful, knowledgeable people who have been where you are and are even finding cures. Keep reading, research your questions and don’t be afraid to mention anything you read about to your doctor. You are getting your information from the horses mouth, us, the patients diagnosed with your disease. Welcome to the forum, although I’m sorry for the reason you are here. Just know that you are not alone, by far!!!!!
      Take care,

    • Anonymous
      October 22, 2011 at 10:44 pm

      I went to a neuro in 1989 and was diagnosed with PN, but not which one. By 1999 it had gotten worse and I pursued a diagnosis again. In the 10 years it had slowly progressed and was finally diagnosed as CIDP. I also wished the original Dr. had spent a little more time and desire on me, but I didn’t push the issue either.

      Can’t cry over spilt milk.

      But you can do something here and now. You are getting worse because the CIDP is becoming more aggressive. IVIG can certainly be an asset for you in treatment. In the meantime remember where you are and what you are doing. Do things to help yourself and not hurt yourself.

      1. Stress is an aggravator. try to relax
      2. During this period of decline, try to rest so your body can recover. Overexertion right now might not be positive.
      3. Continue to do what you can. Doing nothing and totally thinking about your situation can cause depression which can aggravate.
      4. Read up on what CIDP does to your system. The more you know the less scary things are. If you are a faith based person, pray. If not, meditate. Both things will help you relax and keep things in perspective.

      Remember, these treatment regimens are mostly successful, that;s why they are used. Have faith in your Dr. But learn as much as you can. You CAN get through this. Just take it one day at a time.

      We are here for you. vent when you need to. It all helps.

      Good luck
      Dick S
      5. If you are a faith

    • Anonymous
      October 23, 2011 at 5:40 am

      Thanks, all, thanks very much for your words of encouragement. It’s very kind, and very much needed at this point.

      I’m still sort of in the denial stage. A week ago, I had my legs crossed and felt the front of the my right foot go to sleep. I stood up, moved around, and it went away. Then it did it again and again and now that feeling is permanent. All in a week! But some part of me still thinks it’s asleep and will wake up shortly.

      (another part of me thinks that giving up booze upset the balance of my internal worldwide system and set off the recent decline; instead of helping me, it hurt me.)

      For the past 4-5 days, I’ve been waking up with a stiff neck on the right side. It wears off pretty much during the day but then returns the next morning. I can see no normal reason for it. Might this be a further symptom and something I should bring to my dr’s attention?

      Dick: thanks for responding to my other thread and thanks for your offer to share what may happen to me in the next ten years. that said, i think i will decline; i think i’ll just take it one day at a time as best i can.

      More later. Thanks again!

    • Anonymous
      October 23, 2011 at 11:41 am

      Linter, it’s a good thing that you didn’t drown out there in the water; that sudden collapse of muscle made you get back to shore in time. Whew!!!:eek:
      We all get our times of sadness with this illness, but don’t ever give up hope. Sometimes this condition gets worse, and scarier than ever, but there’s still a good chance that you will see better days again. Your body is going to keep on fighting and healing to its maximum ability.
      Take care, friend.

    • Anonymous
      October 24, 2011 at 3:41 pm

      thanks again for the thoughtful words.

      my first IVIG treatment is two days away now, and i’m drinking water like crazy, even though the doctor’s office said the only thing i needed to do was show up and take the tylenol the hospital provides. i think i’ll follow the advice provided here and stop drinking coffee for the next few days and drink more water instead.

      does it sound okay that i’m not going to be doing a loading dose? the way it’s set now, i’m going to get ivig twice a week for two weeks and then every other week for another 6 treatments, bringing the grand total to 10. from my reading here, people are doing much more than that.

      (btw, my dr is russell chin in nyc, who people here have used before w/ good results. so far, i really like him, and i don’t want to do any second guess, but, anyway, well, you know .. 🙂 )

    • Anonymous
      October 24, 2011 at 5:24 pm

      The statistics everyone used to give on the old form (honestly not true that they remain the same today,) is that 60% of people dx with CIDP have the relapsing remitting form which reacts very favorable to IVIG. From the speed of your onset, you most likely have this form. The slow progressive form usually (the other 40%) comes on over many months, or even years, & IVIG is not as effective for that type. You might just find most, if not all of your symptoms disappear after getting your IVIG infusion. You might be left with some fatigue as your most serious symptom, then get more sleep or rest.

      Not everyone fits into one of these catagories, I had my CIDP come on very quickly, & was hit very hard. But then Mayo said I was one of the worst cases they had ever seen. I wish I had been one who responded to IVIG, as I lost all of my sports & still miss them even after almost 10 years. But I guess I accepted that a long time ago, can enjoy watching others skate, play tennis, downhill ski, etc. knowing that once upon a time I was pretty darn good at those sports myself. Besides, I am a grandma now!

    • Anonymous
      October 24, 2011 at 6:19 pm

      Hi, Pam: and I’m nearly of grandpa age, so we’re right in the same kinda-sagging age bracket.

      although what’s happening now with my cidp is sudden onset, i was for years in the slow progression camp. I think I’ve probably had it for 15 years or more — memory is shot too — and was diagnosed with peripheral neur. about 6 years ago, then the diag become maybe NP, maybe cidp and so on. very slowly have i reached this point, though the recent decline was pdq.

      thanks for sharing your story.

    • Anonymous
      October 25, 2011 at 7:34 pm

      Go see the best neurologist you can find; preferably at a top-notch medical center. I am fortunate to live near a university/Baptist medical center and got a CIDP diagnosis right away. Right now I’m being treated with prednisone, but IVIG may be in my future. I’m improving steadily in strength. Have confidence, have a therapist give you exercises. My confidence and faith and positive outlook are rooted in God through Jesus Christ.

    • Anonymous
      October 26, 2011 at 12:47 am

      linter- My symptoms started out slowly and then progressed like yours. I was waiting on Dr. Selwa’s help. She was my Neuro from the U of M hospital. She kept putting off my concerns. I waited until I was paralyzed from the chest down. Then went through the E.R. If I had to do over again- I would have went through the Emergency Room much sooner. They admitted me and started the IvIg that night. Don’t wait. If your symptoms are progressing and you aren’t getting the help you need- Take matters into your own hands. Seek help. Don’t make the same mistakes I did. Get help- even if it means going to the ER.

    • Anonymous
      October 26, 2011 at 10:33 am

      well, i’m sitting in the hospital right now with a needle in my arm, waiting for the ivig to arrive for my first session. been drinking tons of water, taking aspirin, holding off on the bendryl for the moment (could be a mistake … but i have some work to do).

      anyway, i’m glad to be here at last. hopefully, i’ll be one of those for whom ivig works.

      fingers are crossed!

      edit: am hooked up to the stuff now, with starting rate of 47 …

      edit: up to 282 with no adverse effects. i’m beginning to worry that this isn’t even ivig, ha ha. well, let’s hope it stays like this…

    • Anonymous
      October 26, 2011 at 3:21 pm

      First, it’s not happy making your acquaintance on the forum dealing with a severe and rare disease. I’d much rather make it under much better circumstances.

      Second, I did a telephone consultation with Dr. Chin immediately after my diagnosis and right before I started my initial IVIG. I had sent all of my medical records to him to it was a comprehensive consultation although he did not see me in person. I was most impressed with him, so you should be reassured there.

      Correct diagnosis is critical. The GBS/CIDP Foundation has a process by which they can designate medical facilities as GBS/CIDP Centers of Excellence. There are only 10 at present, and not all are even in the US, but if you have any doubts whatsoever, getting a full work up at one of these Centers of Excellence will be quite important.

      I live in the Baltimore area, so when I developed CIDP 5 years ago, I finally ended up at Johns Hopkins Hospital for both diagnosis and treatment. Hopkins is one of those centers of excellence. I have since become very good friends with my doctor who is one of the pre-eminent experts in peripheral neuropathy. Over dinner last night, he told me that 40% of the patients he sees who have been “diagnosed” with CIDP actually do NOT have CIDP, but something else. I doubt that Dr. Chin would make that mistake, but misdiagnosis is, unfortunately, quite common.

      Finally, with respect to the IVIG, do not automatically assume that because others have reported adverse effects of IVIG treatment that you will experience such adverse effects as well. I went through almost two years of IVIG therapy, and only developed mild headaches twice (both during the loading stage). Thereafter I was administered intravenous decadron immediately prior to the IVIG. I also had saline administered with the IVIG, part of the Hopkins protocol for administering IVIG. It sounds like they are starting slow and ramping up, which is both correct and a process to help reduce the incidence of adverse effects. Most of the time after my IVIG treatment (and after the recovery of my motor nerves), I had to tell myself NOT to get any exercise and to take it easy for the rest of the day because I really felt quite good!

      I hope this information helps reassure you and provides some alternatives should you decide you need them. Remember that you are your own best advocate. Do not be afraid to ask questions of everyone and anyone involved in your treatment. Any medical professional worth seeing will take the time to answer your questions and talk with you.

    • Anonymous
      October 26, 2011 at 5:09 pm

      thank you very much for the additional info. very help. let me clear up on thing; it was not dr chin who maybe made the misdiagnosis but another dr who i saw for 6 years prior. ugh. wish i could have tried ivig much sooner.

      today’s treament is over with no ill effects whatsoever (yet … tomorrow’s another day). the brand of ivig i got was caramune. got a dose of 36 grams along with sucrose content of 60g.

      one thing i will say is that i prepped pretty well, so maybe that helped me escape headache etc (yet!).

      thanks again all.

    • Anonymous
      October 30, 2011 at 6:15 am

      just a small update: it’s been five days since my treatment and had no after effects at all. none.

      on a worse note … freaking stupid people. i’m supposed to have 2 sessions a week in the beginning but for some reason i can’t get the idiots to set up the second session and my first week is almost up. this isn’t dr. chin’s office but the co-signing doctor here in rhode island. they say they’ll call back w/ the info and then don’t. it’s really upsetting me and i don’t know what to do. go camp out on their doorstep monday morning? it may be the only solution.

    • Anonymous
      November 2, 2011 at 2:07 pm

      I’m sorry to hear you are having so many problems. According to my doctor, my understanding is that there are very well accepted protocols for the administration of IVIG. Many doctors, however, are unaware of these protocols or for reasons I don’t understand fail to follow them.

      In general, the “loading dose” of IVIG is 2 gm/kg of body weight evenly divided over 5 days. I started my loading dose at Hopkins on a Monday, and completed it on a Friday. Thereafter, I received “booster” or “follow-up” doses at three week intervals, at a rate of 1 gm/kg of body weight. These are all widely accepted standards for IVIG.

      I saw no improvement at all until after the second or third follow-up dose. I started the loading doses on October 1, and it was not until the end of November that I demonstrated improvement. Thereafter, the improvement was rapid, and I recovered 100% of my motor nerves by March. It does take time to show improvement, but if all you have had is one part of the loading dose, then it is obvious to me that you probably would not see any improvement.

      I do strongly suggest an appointment with one of the Centers of Excellence (Hopkins would be a great choice). They can confirm your diagnosis and write up a treatment plan. Having a Hopkins treatment plan in hand might make it much easier for you to get your IVIG in sufficient dosage to make a difference.

    • Anonymous
      November 2, 2011 at 3:07 pm

      Hi ajgeb

      I am under care from the same doctor as you.

      I / we are thinking about stopping the IVIG as a diagnostic step to see what happens. I’ve improved some but have reached a plateau over the last year and a half. Still weakness in legs but short of running and skiing, I’m pretty functional. I’d prefer not to do IVIG forever of course.

      Are you still taking the maintenance dose after a full recovery?



    • Anonymous
      November 3, 2011 at 3:21 pm

      Hi, Ron,

      After full recovery, my doctor and I decided that it was time to taper the IVIG dose. We originally extended the intervals between treatments from 3 to 4 weeks, for about 6 months, and since there were no ill effects, we then started cutting the dose. I believe my final treatment was July 09 (although it may have been July 10, but I just cannot quite remember). I have had no IVIG since then. I do continue to take some gabapentin for pins and needles in the backs of my hands and occasionally for my feet, but given that I have severe degenerative arthritis in both shoulders (caused by an auto accident decades ago), we believe that the problem is more muscular-skeletal than nerve related. I have and have had 100% motor nerve strength, my weight training (largely curtailed because of the shoulders, but still do some) and cardio are all back to pre-disease levels, and have been for some time. I have been skiing, scuba diving, and lots of traveling without ill effects. In fact, sometimes my hands and feet do better when I travel (something I enjoy very much). It would be easy to say that motor nerves and function are and have been at 100% for quite some time, sensory nerves at 95% – 98%.

      As many have pointed out in this forum, everyone is different. Know your body, ask questions, and be sure to give the doctor plenty of feedback. I hope your recovery continues to go well.

    • Anonymous
      November 4, 2011 at 8:14 am

      Thanks ajgeb

      Glad to hear your success story. While certainly not 100%, I can live with my present condition especially if I maintain it while coming off the IVIG. We’ll see how it goes.