How does CIDP affect you?
AnonymousSeptember 3, 2006 at 2:25 am
CIDP affects us all a little differently. Some of us have relapses frequently (every 3 or 4 weeks), Some have longer periods between relapses (maybe several months or longer), and some haven’t had relapses for a couple of years.
Others don’t relapse per se, but experience a general decline. Some at a fast pace, some slower.
In my case, CIDP is a continual decline. My rate of decline is slow. It changes over months and years, slowly but surely. In 1999 I was experiencing numbness in my big toes, but was not limited in any way. By 2000, the numbness spread back my feet, and I began experiencing foot pain. By 2003, I wasperipherally numb up to my knees, and my feet were almost completely numb. I was starting to have difficulty getting around. By the end of 2004, I was reallyt having a hard time getting around, I was having issues with stamina, I was losing strength. NOw in 2006, I am on disability, use a powerchair for walks longer than 100 yards, am limited in what I do,. My pain is a constant reminder to me. Numbness affects me up to mid thigh in my legs, and my hands tire easily and are clumsy. I have suffered shooting pains through the entire process. If I do too much, I am now driven to bedrest to recover.
Each of us has their own journey. If we can share a little bit about how CIDP progressed in each of us, it could be a great resource. If there is a signal that lets you know that a relapse is coming, list it. If there is something that starts to happen when your relapses start to dissapate, list it.
In short, how did CIDP affect you? How is it affecting you? How long have you had it? I don’t think CIDP is age or gender specific, but I am 48 and male. We can talk about treatment options later. Let’s keep this thread to how CIDP affects you.
I look forward to hearing from all of us.
AnonymousSeptember 3, 2006 at 10:33 am
Dick I am very lucky the only pain I have is from nerve biopsy. I have other problems with my back but was told it is not CIDP related. I originaly had trouble with my feet hard time walking then problems with my hands (holding a pen)but that went away after a few weeks. But DR told me I was getting worse then went to see Other Neurologist and everytime I see her I am improving almost at 100% right now.
I do get tired still but I work 39hrs a week and never needed IVIG or steroids and never lost time for my CIDP except a couple of days because of my nerve biopsy or to go out of town to see her for my checkup.
But wondering if I will ever relapse. Maybe I shouldn’t think of that. Just live day by day. I suppose to exercise to strenghen my lower back and legs but it is hard after an 8 hrs at work.
Dick any chance you can get other treatment like Doc David did and others to stop the progression of the disease?
AnonymousSeptember 3, 2006 at 12:19 pm
It’s good to see you posting here once in awhile.
I never had pain, but I do have ALOT of numbness. I am numb from feet up a little past the knees. The numbness in arms receded from above the elbows to a little above the wrist. I am no longer progressing (remission or self cured), but I was setting a very slow “progressive” pattern”, months or even a year could go by before I progressed again. CIDP took away my comfortable sleeping positions, I still get what I describe as “bone pressing against bone with no cushioning”, if arm presses against arm or leg against leg. Time will tell how much more I will heal.
AnonymousSeptember 3, 2006 at 2:35 pm
Hi, Dick and all!
Dick I am impressed over your stamina! You are a source of inspiration for us all!
I was dx cidp jan 2006 after slow NCV and raised proteins in CSF, this was after a year with tingling and numbness in my feet and hands.
Had IVIG 5*30g in march 2006, no improvment. My neuro thinks it´s better to wait with treatment (IVIG/Steroids) because I still have no motor problems, only tingling, numbness and pain. I take Lyrica for paraestesi and codein to sleep.
I have had symptoms for about 2 years, slowly progressive, over months.
AnonymousSeptember 4, 2006 at 12:04 am
My first symptoms started in 2001 in Thailand while in the Peace Corps with a mild numbness in my feet. I was not very concerned about it then but did report it to our nurse. Progression has been very slow since then. We returned to Thailand in 2002 for two years where it got increasingly worse and more troublesome. One time in 2004, crossing an asphalt road, I noticed that one of my feet was getting very hot but not the other one. Looking down I saw I was missing one of my sandals. I had left it upstairs at a restaurant under a table without noticing it. I fell a couple of times that year. Later that same year I bought my first cane to help me with balance problems.
Today, five years later, there is numbness all the way up to my knees and in my hands and more severe balance problems and weakness in my legs. My hands and arms are still pretty strong. I can lift perhaps 30 or 40 pounds as long as I pay attention to keeping my balance. There is no pain.
I was first diagnosed correctly in Fall 2005 with having CIDP with antiMAG IgM, a variant. I started IVIG after that which brought some but no dramatic improvements. But at least I can now walk around the house with no support but still need a cane outdoors and a walker for longer distances. I tried Prednisone earlier this year but it only caused muscle failure in the legs and no relief.
AnonymousSeptember 4, 2006 at 1:36 pm
Mason started having leg cramps the first off july. He also was studdering bad. He has always been off balance falling down. He has always held his left arm were his wrist hangs down. We just thought it was because he was left handed.
Mason had bad headaches in March thru june. They diagnosed him with a head concussion. They said he had swelling on the frontal lobe.
By July 18 his cramps had moved up to his arms. He was in severe pain. It would hurt to touch him. July 21, I took him to a Dr Hall, 1hr and 30 min away. Dr Hall told me he could not see anything wrong with Mason. I told him something is wrong with my son. I could not explain it, but something was bad wrong.
He took blood, by the time I got home Dr Hall called me, himself and told me Masons liver count was elavated. He wanted me to come back that Sat or Sun.
Masons Birthday party was Sat so we were going to go Sun. Sat night after the party he could not walk the bottom of his feet were killing him. I carried him to bed. Three hours later the pain had moved to his back.
I told my husband I was taking him to the ER. The Dr at the ER said all he could do was give him a shot for pain.
We got home at 3:30 that morning. I stayed awake Making sure Mason was breathing. We got to Mobile at 9am. Dr Hall sent us to USA hospital. He has been admitted three times in one month. What I have a hard time understanding, Mason can be fine one minute then all of the sudden he is in terrible pain. I can’t figure out whay is triggering it.
He also is very sensitive about noise, he is scared to death of thunder storms and lighting. I have never seen him act like this. His personality has changed too. He is angery.
Today is the first day he is not hurting. I am so happy.
I guess I have shared enough. I hope my rambling has helped someone.
AnonymousSeptember 4, 2006 at 6:59 pm
Emily’s symptoms started with arm pain. Then it progressed to foot pain & foot drop. Her right eye became paralyzed & 4 days later she couldn’t walk, stand, sit up, run, go up stairs, lift her arms or open her fingers. She was dx’d with GBS due to high CSF.
Emily’s right eye is the problem area. She has to get IVIG 2 times a week to maintain it. If she goes 1 week without it, it’s paralyzed again & takes about 6IVIG’s to get back to normal. Other than that her feet will start to relapse every 6 weeks or so. This month we are testing if upping her IVIG to 3 times a week for 2 weeks around the 4 week mark will ward off the relapse.
When Emi is on IVIG & her CIDP is in remission you would never be able to tell that she wasn’t a normal kid. She doesn’t seem to have any residual deficits from CIDP yet. We’re keeping our fingers crossed that we can get it to go into remission soon.
AnonymousSeptember 6, 2006 at 12:40 pm
I am glad that so many of you have chosen to respond. Sharing our stories can help others relate to what is happening to them.
Personally, I am still dealing with what I have. I have worked hard on accepting my situation, and trying to move forward. Some days it is easier, and some days harder.
CIDP has a multitude of different progressions though, and understanding that is a hope for us all.
Keep those stories coming
AnonymousSeptember 6, 2006 at 2:58 pm
I responded on another thread, but will respond here by saying that my CIDP has changed. For the first five years it hit only my autonomic system. Then for the next four years it hit my sensory nerves, causing motor symptoms only when I managed to catch the flu, which was only about once a year and which IVIg stopped. The past eighteen months, however, I’ve been relapsing in the motor nerves every few weeks, with automatic remissions, but with each remission I’ve been left just a little worse in the motor nerves.
I saw my neuro in June. She asked me if there was anything I needed. I asked her if she knew of anyone who was willing to undergo a body transplant.
AnonymousSeptember 6, 2006 at 3:55 pm
For me, it started about 9 yrs ago with foot pain and numbness. I was used to walking 2-3 miles every day and hiking 5-10 miles every weekend. Most Sundays I led the hike.
I had my first EMG in 1998, and my doctor (GP) told me it was diabetic neuropathy, although my blood sugar wasn’t that high, and it was tested a year earlier and was normal, so it hadn’t been high that long.
I went to a neurologist who confirmed it and gave me Neurontin. That helped, and I was able to get back to hiking and walking at lunch. Around 5 yrs ago, I started getting cramps in my calves when I tried hiking uphill. Around then, my neurologist moved, and I started seeing a colleague of his. That doc told me it was caused by a pinched nerve in my back.
The pain got progressively worse, and by early 2003 I found it hard to walk more than a block without stopping for a break. I finally consulted an orthopedist in 2005. He sent me to the neurologist I’m seeing now. Meanwhile, things kept getting worse, and now I have pain in my legs most of the time. I also find myself tripping on the sidewalks if I’m not careful. A couple weeks ago, I realized the numbness was in and above my knees for the first time.
I started IVIG in June, but the symptoms got worse. I also had some nasty side effects, including a rash that felt like chicken pox- that rash is as disruptive to my life as the leg pains.
I made an appointment to see another neurologist at the end of this month, just to settle my mind on this….
AnonymousSeptember 7, 2006 at 1:42 pm
I am a CIDP Contact Person with the UK GBSSG. Currently I am hospital visiting a 60+ lady who actually lives only half a mile away from us. Her experience began in January but it was May before she got to a neurology consultant. By then she was paralyzed to the waist. Her hospital treatment has been very good, including IViG backed up by prenisolone. Getting good physio and she is very determined. Not yet standing up on her own but getting there.
Much more facility in hands and legs.
I’m able to help her and her husband to answers about ‘electrical shocks’ and ‘pins and needles’ and the other experiences. And “Why do my feet tighten when I lie down at night and then up into my calves. That really hurts! Does it happen to you?”
“Yes, for 13 years.”
13 years of PDN/CIDP help in answering other sufferer’s questions.
AnonymousSeptember 7, 2006 at 8:29 pm
[COLOR=”Purple”]Hi Dick and all, I’ve been wanting to respond, but how do you condense such a life altering disease to a few words? I’ll try. I had symptoms for at least 10 years. Started with decreased stamina, tripping, falling occasionally, mild weakness, things you could hide or just reason away. Over the years, everything gradually got worse until 2 years ago when I stopped being able to hide the fatigue, pain in my legs, weakness in my arms and legs, and severe back pain. As a Nurse it was almost impossible to function in my job. I didn’t do anything about it until I could no longer do my job. My co-workers finally conviced me I couldn’t work any longer. I went to my neuro consult 6/05 and after EMG, was immediately diagnosed. Also had the lumbar puncture. I’ve been on IVIG monthly since last August. The first three months helped, then back to zero. Literature says the sooner symptoms are treated, the better. Maybe that’s why I still have so many problems. Waiting all those years. I really thought I had M.S. and didn’t want to know. I still have alot of weakness in my arms and legs. If I go out and try to walk around at a store even with my walker/seat, within an hour I feel like I did when I worked an 8 or even 4 hour shift. It feels like my body shuts down, I have pain from head to toe and the fatigue overtakes me. At that point my thought process’ are very slow,my memory is zilch and I just generally can’t think. When I’m not doing anything, I feel like I should be able to do everything. That’s the frustrating thing. Symptoms kick in when I try to be active or exert myself. Sorry this is soooo long. Take care, Vicki[/COLOR]
AnonymousSeptember 8, 2006 at 2:25 am
Our symptoms and progression seem to be very similar. I too started out mostly sensory, and not so bad motor. But lately the motor aspect has been getting much more challenging. This past two weeks, my thigh muscles have been fatiguing totally after only a couple of hours out of bed. My feet have been quite painful as well. I can definitely relate to your desire to trade out body parts. I could get rid of my legs and get new ones.
The other thing is relating my pain to my Doctor. They always ask “How is your pain, on a 1 to 10 scale?” What I used to think was 7 or 8, now is probably 2 or 3. Or if the old pain stayed 7 or 8, I would need something like 20 or 25 to score it now. I just can’t wait for the next 10 years to pass…….
As far as going to bed and waking up stiff as a board. Count me in. I don’t hardly move at all at night. As a result, my joints are so stiff, it is very painful when I get moving in the AM. When you add in the 6 heel spurs, and plantar fascitis, mornings are a real treat.
I guess I am grumpy tonight. I’ll be better later.
AnonymousSeptember 8, 2006 at 2:47 pm
i was diagnosed in august of 2006 after years of chronic foot pain and then numbness. it seems like soon after the diagnosis my symptoms worsened quickly…. more pain, more numbness. neuro put me on 80 mg prednisone daily and in one month i was in the emergency room, completely psychotic from the steroid. since then ive been on ivig once a month and it seems like the pain and numbness are at bay. i think the steroid psychosis along with the emotional trauma of my diagnosis has thrown me into a depression which i am battling now with some antidepressants and some sleeping pills….. how has it changed my life? i defintitely have days when all i want to do is stay in bed because i feel weak. i’m somewhat limited by the pain in my feet, so walking more than a few blocks sometimes wipes me out. i used to love to walk alot especially when travelling to new places… now it can be torture if the pain really kicks in. walking my dog charlie can be kind of tough as well. overall, right now i am trying really hard to not feel cheated out of the life i used to have…. very healthy and strong, able to stand up at a cocktail party for more than 20 minutes, etc etc…. i keep trying to look on the bright side as much as i can and take my lumps as they say. i know everything happens for a reason, im just not quite sure yet what the reason is. sorry if i rambled….. im just glad to finally have an outlet like this website where other people actually know what i feel. steven
AnonymousSeptember 9, 2006 at 2:30 pm
I first became symptomatic in October 1994. I was getting a lot of calf cramps, but I thought maybe I was just overdoing it at the gym. My feet were killing me, and a friend pointed out to me that I was limping all the time. By the next week I had itchy hands and feet, exacerbated by showering or bathing. I was falling frequently and couldn’t open jars.
My GP suspected a vitamin B deficiency, but the test showed nothing. He sent me to a neurologist who diagnosed me with GBS. By this time (Nov 94) I was having trouble breathing, so he admitted me to the hospital. Because of my health insurance, I was released 4 days later–they didn’t want to pay.
I continued to have slight improvments, and then relapses. In Jan 95 I started outpatient plasmapheresis with a new neurologist (I switched insurance. My old neurologist was great, but the insurance not so good). After 3 months of plasmapheresis 3x a week, my veins were all collaspsed. I saw very little improvement during this time. I was devestated and didn’t know what to do.
Thank goodness my co-worker’s father worked as a neurologist at Columbia Presbyterian. She asked him who he would see if he was diagnosed with GBS, and he recommended Dr Robert Lovelace,who immediately changed my diagnosis to CIDP. I saw him in April 95, and he admitted me to the hospital for plasmapheresis, IV-IGG, and started me on prednisone. Yes, I gained 30 lbs in 2 weeks, but I was recovering.
I’ve been on pred since April 95, and have had 2 major relapses since then, requiring plasmapheresis and IV-IGG. I still have pain and numbness in my hands and feet, and balance problems. In addition to the relapses, my nerve conduction has slowly deteriorated over the last 10 years, by 15%. I can’t go running or rollerblading, wear high heels or play guitar, but there are still a lot of other things I can do. I have this for 10 years and I’m still adjusting.
AnonymousSeptember 9, 2006 at 4:41 pm
A few days after July 4th last year, I woke up with my arms and the backs of my legs aching like they never have before, or since… The pain moved from my legs to my back and hips… About this time I begain gettng the pins and needles which moved up my feet and hands… By the end of the month I could not climb stairs, open a door with a key, sleep on the bed, and would have to brace myself in the shower when wasing my hair (closed eyes)… I had 5 MRIs done and finally saw a neruologist who did the nerve conductivity tests and diagnosed me with CIDP… We discussed treatments but by that time (early September) I thought I was maybe getting a little better… He wanted us to take some time to consider the treatments he recommended (steroids / IVIG) and prescribed a low dose of gabapentin (sp..???) which really helped the pins and needles in my hands (they bothered me more than my feet)… When we met with him again, I knew that I was regaining some strength… Today (almost a year later) I can climb stairs, open jars, and sleep on a regular mattress (slept on airmattress for 3 or 4 month)… I cannot stand for more than a few minutes and actually do better if I walk rather than stand… I have some issues with balance, sensitive finger tips, fatigue, and I get the pins and needles in my hands and arms if I use them too much… I have not taken any treatment but the gabapentin and have had no relapses (knock on wood)… 🙂
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