Your progression of CIDP

General General CIDP Discussion
1

Hi there,

I was diagnosed 1 year ago and have been doing twice weekly IVIG. I'm 34, and the only symptoms i have are related to muscle weakness. It started about 7 years ago with weakness in my hand. I wasn't able to grip things, write, or perform fine motor tasks. Then, about 6 years later, i started to have a lot of difficulty walking. Since I started my IVIG, i don't feel like anything is better. In fact, just recently, i can't extend my ring and baby finger. This starts to happen after about 1 minute of typing, and it lasts for a while- i just can't open up my hand to do things like wave, catch a tennis ball, wash my face, etc. I'm at a loss. I do hand therapy and physical therapy. My doctor and therapists don't have any answers for me.

I would love to know how your CIDP started, what you noticed, and how it progressed. Also, if you receive IVIG, how has this helped you, or not helped you. Anything similar to me?

Thankyou so much for any your personal journeys with CIDP.

~sarah~

2

Hi...I am 36 and was diagnosed over 18 months ago. Mine began with the name of Guillain-Barre, which is acute, and usually lasts less than 3 months...but since mine has gone past that, they diagnosed me with cidp. Mine started with numbness and tingling in hands/feet, and quickly progressed through my body. I began falling down stairs, and could not feel holding a pen. (I am/was a medical social worker, which meant 60% of my job was documentation.) So...to try to keep my job as long as possible, I began wearing special gloves in order to grip the pen. Then, one morning, I woke up (with 2 young kids and a travelling husband who wasn't home) and my whole left side was numb. I was quickly admitted to the hospital, and almost intubated with a ventilator and an ICU patient.

Llllooonnnggg story short, for the next 8-12 weeks, my neurologist began weekly IVIG treatments. At first, I felt much better after infusions...but then it started to taper off to where I was getting very little results. That is when the doctors began plasmapharesis. They were reluctant to start it because of the "seriousness" of the treatment, and my age. However, after the first few pharesis treatments, I began to feel hope. The purpose of pharesis (as I understand it) is to remove the "bad plasma", and infuse new plasma, all while hoping to keep the "immune system calm" and stop attacking my nerves.

Now...it's been since June, 2012 that I've been getting pharesis every 10 days. I had internal, bilateral, permanent ports placed about 4 inches beneath my clavicles because they do not know how long I'll need the pharesis. However, I initially had to resign from my job in Jan, 2012 and just started working again part time...so, clearly, the pharesis has helped.

The only advice I have is to be your own advocate. Research plasmapharesis, and talk to your doctor about starting the process. If you desire to have it done, but your doc is hesitant, push for what YOU want and need. I also take Lyrica and Namenda to help with neuropathy.

My biggest frustration with this disease is I often wonder "why me?" and that no one else around me truly knows the day to day battles. So, please, stay strong, and keep me posted...I'd love to stay in touch and see how you're doing.

Hope this has helped,

Melissa

3

I was diagnosed 10-12 with cidip. I was diagnosed with fibromyalgia six years ago. I am just realizing a lot of my sickness is the cidip. I can't walk to the back of Wal-Mart any more. After about three isles my legs get really heavy and they go numb and hurt really bad. I panic how am I going to get to my car as I put all my weight on my grocery cart. Then when I get home I can hardly walk and I have to go to bed for at least three hours. I can't go to more than one store in one day , I can't make it through any of them . Lowes is terrible. I think it is the cement. I have always worked two jobs. I have fmla and I can't seem to get five days a week in anymore. I get really bad when the barometric pressure changes or the temperature drops I can't even get out of bed. I don't know if that is my fibro or my cidip. But the weather really has an impact on how I feel. I am really going through a depression worrying about not being able to work. I worry if I get sick about being able to pay for my house and my bills. Every day I worry about getting worse and not being able to walk. When I am sick in bed for more than two days I feel like giving up. When I feel good I feel like I can get through. I really want to know what other peoples symptoms are too. Thanks!

4

Sarah

Like you my symptoms started with numbness, weakness and tingling pain in my pinky and ring finger. Within a month both hands were cupped over like claws and I had lost the ability to separate my fingers. Meanwhile I was making the rounds of neurologists, and getting the diagnosis of carpal tunnel. Even then I realized that was wrong since I had involvement in all fingers of both hands. I finally found a doctor who made the CIDP diagnosis based on the marked deterioration between an EMG in July and another in November. I started IVIG in December, a relatively high monthly dose of 1500 ml over two days a month. I also do mobility exercise. So I've seen improvement in my hands, but now the pain and numbness has spread to my feet as well. Like the previous post, I can't walk from the front of Walmart to the back and I have to use their electric chairs to shop. I also have intermittent tremor and significant fatigue. All this is very depressing. I just have to hang on to the thought that the IVIG is helping to prevent progression, and that I'm not facing plasmapheresis.

So that's my long story. Sometimes I think doctors can't give an answer because there aren't many.

Steve

5

I was DX’ed with CIDp in August 2012. 3 months before (and probably earlier) I started having severe muscle cramping in toes, legs, back, neck, arms and hands. Severe: meaning debilitating. I also started having tremors, shakes and bouncy dancing moves when I walked. Also ‘cement’ legs. My left arm would not fully extend without some degree of forcing it to move i.e. reaching up to get a coffee cup out of the cupboard.
In July 2012 I had EMG’s and a lumbar puncture.
Flash bang, I get IViG every 4 weeks. The first round for 3 days was with Octagam, which made me very sick (read side effects) I was then switched to Intragam and the side effects lessened.
To date (1 full year): I am still receiving Intragam every 4 weeks. My primary symptoms have lessened considerably i.e. cramps, moving like Jagger etc.
Upon receiving the infusion, the first week, I am tired, weak and generally not feeling well.
Second week, and I am coming out it all and feeling pretty well.
Third week, I am my old self, full of energy and giggles.
Fourth week, I start to have symptoms back, although quite mild by comparison to a year or more ago.
I used to force myself to get to work everyday, and I, my wife and Doctors amazed I could pull it off as long as I did. However my home life suffered as I had no energy to do any household chores or much else, as I went to work and came home and slept.
I resigned my job in June 2103 and have been able to do housework, household chores and maintenance. I some times even socialize.
I plan to get back to work when things health balances out or at least levels off.
I am 58 years old, (American) living in Australia and receive free (mostly) health care. Medically, everything concerning this DX has been very good.
I still have (at times) what my wife calls “tiny dinosaur arms”, cement legs, mild tremors (in legs) and mild muscle cramping.
Over all, a noticeable improvement in my life since starting IViG.

6

Bob, I have been on Gammunex 65 grams, for 2 days every 4 weeks for the past 4 years. It is interesting to me that our side effects and progression are so similar, as well as our symptoms. I am 56 and retired last Feb because I just plain could not keep up. Four years ago I was wheelchair bound and now I am not. Even though everyday has it’s struggles IVIG has helped me greatly. In fact I am waiting right now for the pharmacy to deliver my next dose for my infusions on Mon. & Tues. I’m so grateful for all of the people that donate their blood and are involved in the IVIG process.

7

Legs felt slightly heavy in Jan 2012.

Saw a neurologist, had EMG and and was diagnosed with diabetic amyotropthy.

Started more physical therapy.

Have a new endocrinologist who diagnosed me as a type 1 diabetic after being type 2 for many years, also was diagnosed with celiac disease 12 years ago.

Started falling day after Labor Day 2012 and was in a wheelchair for 6 months, still never had any pain, just that sandy feeling in feet and then hands. Hands are fine now.

The new neurologist had me go to St Peter's Hospital. Was in for three days of extensive testing and then in a rehab hospital for 16 days. Still diagnosed with diabetic amyotropthy.

They thought I was making progress, but my upper body was still strong and I was using my upper body to walk using a walker.

Got home and had Visiting Nurse service for PT and OP, was still getting weaker.

Saw the neurologist and he saw that I was getting weaker.

Recommended I see a certain specialist.

Saw me on a Thursday(week before hurricain Sandy) and could not believe how weak I was.

Had to wait for the next Wed for him to do his EMG.

Came back on Wed and did EMG and saw some positive CIDP.

Started me the next day aggressively with IVIG and solumedrol and had it 2 times a week for 3 weeks, skipped a week and have once a once week with the solumedrol slowly being reduced from 1g every other week to 500 mg then 250 mg and now 80 mg with 40 mg in-between.

Results were slow and positive with real rapid progress after a few weeks, getting up from wheelchair felt easier and was soon able to open a bottle of water as my hands and arms had gotten weaker.

I guess I'm lucky, really no side affects except a little jittery after infusion, able to sleep.

Used a walker for about a week then a cane for a couple weeks then nothing.

Feeling stronger and now progress is slower as I get closer to 100%.

I'd say I'm about 90% now.

People who saw me just a few months ago say "it's a miracle"!

I'm going to be 69 in a couple of weeks, can now just about run up the stairs, not that a 69 year old should be running up stairs.

Marvin

8

Sarah I’m sorry that IVIG doesn’t seem to be helping you. Has your Dr. tried changing brands of IVIG? For the first 6 months of my treatment I was on a different brand. My Dr switched me to Gamunex-C. I have had better success with it and I tolerate it better. Take care. Cindy

9

It has been almost four years since I started getting IVIG. I now get it twice a month, and it seems to keep me from getting worse. I can walk but not run, I always have some pain/cramping issues in my hands and feet, I take gabapentin daily. The pain is always there, but not debilitating. I can do yoga and mild exercise. I feel better in cool weather than in hot. I have no idea what the future holds, and tend not to look too far ahead, and just try to live in the moment. Good luck to all.

10

Hey Sarah,

Sorry to hear about your current situation. I was diagnosed at age 13 in 2006 and am no expert on CIDP by any means, I know that the illness effects people differently across time scales but such a slow progression I have never quite heard of. I would question your doctors on it being CIDP related perhaps. Nevertheless I would advocate the same advise as Melissa, be your judge of researched information and tell them what you want/need/think. Control the aspects of life which don't require physical strength to keep you sound. At least until you are able to gain that strength to do it again.

Best wish

Tom

11

Hi Sarah, I have been on IntergramP ( IVIG) and it didn't help me. I only had the course over 5 months. After that my Neuro at the Alfred Hospital then told me I was one of the few that couldn't be helped. More or less said "there's the door and close it on your way out." I have heard that you need more than one course of IVIG for it to work. There are other treatments that might help and if I was a private patient they would help me. I'm not so they wont. Like you, I am getting worse. I am always dropping things, I find it hard to pick up small things. I have to look at, say matches or coins when I pick them up .I cant feel them so I have to look. I walk like I am drunk. I also have Ataxia so that doesn't help.

Give the IVIG a chance it might work. I really hope for it does. Keep up the physio .At least that will help. Look after your self. Shirl

12

I was diagnosed with CIDP in April 2011. I got the H1N1 vaccine in November 2010 and within about 10 - 12 days after the vaccine my foot started to tingle and go numb. I didn't think much about it at first. It was mainly at night, it felt like my right foot was falling asleep. But then the top of my foot started to feel numb and pain started in too... then started to happen in the left foot too. I went to my GP and she thought maybe pinched nerve in neck. Did neck xray and MRI - nothing out of the ordinary. So she though maybe wait and see if it calms down. Well it didn't calm down. I started to feel numbness and tingling in my hands too. I would drop things like my razor and soap while in the shower. This scared me. My legs also felt really heavy, almost like trudging through thick mud. I started to trip over my own feet for no apparent reason. So I decided to see a neurologist. This was in January of 2011 so I was having symptioms since November. She immediately talked about CIDP in the first appointment and said she needed to order some more testing. I went home and Googled CIDP and was really upset! She didn't say much in the appointment about what CIDP was just that she though maybe that is what I had. Well we did another MRI with contrast, EMG and nerve condution study, loads of blood work to rule out other diseases and the final test that pinned the diagnosis for me was the spinal tap. With my EMG and NCS showing moderate demylenization and my spinal tap was positive for high protein she said it was CIDP. So then since I had a diagnosis then I has to start some type of treatment. Started with Prednisone first and hated it. I felt horrible on Pred. Couldn't sleep, couldn't concentrate, agitated all the time and general icky feeling. She stopped the Pred after a few weeks and we went with IVIG. I saw good results within a few treatments. I now get IVIG (Gamunex) every 21 to 28 days depending on my schedule and how I am feeling. I use to go to an infusion center but now I get it at home with a nurse. The IVIG has kept my CIDP at bay. I have not gotten any worse but not gone. I feel a little out of sorts the day of and two days after the IVIG, mostly achy and fatigued and very foggy in the brain. But then for about two weeks I feel good. I almost can forget about my CIDP as long as I dont' push it. If I push it I get 'creepy crawly' sensations in my legs and they ache. But I know when I need another infusion. My legs start to ache at night keeping me awake. My legs feel heavy again and creepy-crawly sensations and my hands start to ache. I try to push it out for 28 days but usually need the infusion at 21 days. My hope is to get out to 4 or even 5, 6 weeks between infusions. But I seem to go down hill around 24 days every time. It is a push when I need to go out to 28 days due to scheduling conflicts. But I guess I should be happy. The IVIG is keeping the disease steady. My current EMG/NCS I had a few months ago showed little change. Still moderate demylenization (I was hoping for improved results but happy not worse). I currently go on with working full-time. I have a 9 year old daughter and am very active in my life (just have to take things slower and know my limitations). But the anxiety of the not knowing and my future medical bills eat away at me all the time. I find myself thinking and thinking at night about how am I going to retire with such high medical bills (IVIG is very expensive), what if I can't work (hubby is unemployed currently), what if I can't drive, etc. I hate feeling nervous and anxious all the time on top of CIDP symptoms. But I go on and try not to dwell too much. Hopefully they will come up with a better treatment withing the next 10 years. Good luck and keep trying different treatment options. Maybe the immune lowering drugs are a route to try. I hear people get good results with treatment that route. Sometimes go into remissions too.

13

I became suddenly ill with fever and dizziness and after two or three days ended up in the hospital with meningitus. This was almost four years ago. Symptoms of CIDP: hand cramps, numb feet, fatigue, started 2 years ago. It came and went a couple of times but since this past Spring has diminished my ability to walk and I have a tremor inside me and in my right arm. I was finally diagnosed two weeks ago. As I write this I am receiving my second day of IVIG. Hoping for results. tg

14

I truly hope it helps you. I will keep you in my thoughts. Take care- Cindy

15

Hi Sarah

I was diagnosed with CIDP in 2011 it started when I could not raise my arms above my head .Was admitted to the hospital for IVIG treatments for 3 days been on IVIG every 8 weeks now .I also take 2 300 mg of Gabapinten 3 times a day for the nerve pain seems to help some.

16

I have been on IVIG for five years now. My disease started with right leg weakness and over five years both legs are now weak, almost constant fasciculations, with nighttime and daytime cramps. I have vibratory and sensory loss on both legs as well as episodes of shooting pains in the legs. I receive IVIG every two weeks. I still have weakness but I can still walk and move everything except a few toes. I feel like the IVIG has slowed the progression but has not made me better. Symptom management of the disease is key to making your nights better. Get pain medication if you need it or medication for cramps. For me, the nighttime cramps are the worst as they disrupt my sleep and are so painful that even the next day my muscles are sore and aching. Continue the IVIG and see how you do.

17

HI, I am 77 and was diagnosed in 20 11. About 5 weeks after I had my last chemo for multiple myeloma I started to get tingling in my hands and feet, it progressed to weakness in my legs and severe lower back pain that extended down my legs and to my feet. It was the worst pain I have ever experienced and no amount of drugs even touched it. I had a reaction to the drugs and was "out of it" for several days that I have no memory of. When I came back fortunately the excruciating pain was gone and the pain I had was tolerable. I had several different treatments that did not work and finally I was given 5 IVIG treatments that gave me some feeling in the bottom of my feet so I was able to drive after a year of not being allowed to. My feet and legs are basically numb as well as my hands and lower arms. In the beginning I would have what felt like electrical shocks. I do wish that numbness meant no pain but I have burning and tingling, my hands feel like they have grains of sand covering them and my legs feel wooden. Lots of physical therapy has been my savior, I learned to walk on "dead" feet, dress myself and completely take care of myself as I Iive alone. 1VIG I had another 5 days of it that did absolutely nothing. I am thankful for the results I did get the first time and intend to keep on keeping and enjoy the rest of my life w/the help of neurontin, tramodal and PT. My 2 kids and g'daughter make it worthwhile to hang in there, also my cat that no one but me wants, you are young and have along life ahead of you so don't give up, maybe in your lifetime they will find a total cure.

18

My family and I are military and I was diagnosed in December 2002, by an amazing neurologist. At that time he was only one of seven military doctors who went through neuropathy school. I had gone into liver failure two years before that due to my being diagnosed with Sjogrens, which is a sister disease to Lupus. In September 2002, I was air evacuated from Ohio to Texas to see this doctor because the doctors at our base weren’t able to figure out what was wrong and my family was worried I was going to die before they figured it out. By the time I reached Texas I was wheelchair bound and comatose and no one knew why. After practically living in the hospital for four months this doctor admitted me to the ICU and put me on IVIG constantly for three days. Within about three weeks I was beginning to feel better and become stronger. Over the past eleven years we have tried several times to discontinue the treatments but each time I end up back in the wheelchair and in bed, unable to live an active life and single parent my children. In the beginning I was receiving my IVIG treatments once per week, but now, due to the cost of the treatments, my doctor can only prescribe it once every four weeks. My infusions are done at our local VA hospital with an amazing medical staff. I feel they give back to me so much more than I have for my country. My doctor told me that if it were up to him he would infuse it every week, but there are so many patients who need it and can’t receive it, that they are unable to increase mine. My doctors have decided to issue me a service dog that will be trained to know when I’ll pass out before I’ll even know and will be strong enough to catch me. Then, when/if I end up back in my chair, he’ll help me with that too. How amazing, huh? I still can’t feel my lower extremities and the neuropathic pain is awful, but I believe my biggest issue happens around my third week where I pass out all the time. It’s very concerning to my family, but it’s become a common occurrence to me. I have found that CIDP effects almost every one of my organs, but, compared to where I’ve come from ten years ago, it’s not much to complain about. I believe God gives everyone a plate to deal with in life and he’ll never give us more than he and I can handle, together. I try and stay positive but, honestly, there are times when the depression of everything makes it hard to handle. It’s great to know that all of us here understand what we’re going through, when no one else possibly can. It would certainly be nice if there was enough in the research budget to find a cure for CIDP so that our children don’t have to suffer from it.
Take Care Y’all and thanks for listening,
Donna

19

Donna, I think you have a terrific attitude .I am nowhere as sick as you and my attitude isn't that good. I wish you all the best in the future .Take care. Shirl

20

In early 2012 I had a knee arthroscopy and was diagnosed CIDP 4 months later and have had IVIg every 4 weeks since which has contained the condition with only my legs really involved. I can walk but have the usual issues with balance (etc). First symptoms were within days of the surgery in the surgery leg. I have done a lot of research on the possibilities recently and suspect I started with either GBS or AIDP that became chronic by the time of diagnosis. If you have tried researching this subject you will understand the frustration of not getting access to the full journal articles.... Now I just need someone to publish the paper I have written! Might help someone.