Your Progression of CIDP
AnonymousJuly 26, 2013 at 2:59 pm
I also posted my discussion on http://www.cidp.org (another great support website). 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 was diagnosed, and 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.
July 26, 2013 at 3:44 pm
There is a lot of individual variation with CIDP. My case was rapid onset, reaching minimum syrength from initial symptoms in about ten weeks. Since then, I have recovered most of my strength and balance. IvIg didn’t do much for me. I haven’t used it since my initial loading doses. My primary treatment was plasma exchange, followed by steroids (now discontinued) and an immune suppressant (ongoing). My pattern is atypical — yours seems more usual, from what I have read. There is no one treatment plan which is best for all with CIDP.
February 10, 2017 at 10:44 am
I was diagnosed with CIDP December 20,2016. My symptoms started with left foot drop. Then progressed to lower leg weakness at both ankles. Then my right foot began to be numb. My right upper leg also feels numb at times. Walking is very difficult especially if I don’t keep my head down to watch where I am walking or I get very dizzy and loose my ballance. Typing this is very difficult as I get spasms in my thumb and finger. I am to start IVIG next week. Pray that it helps. I also have lower back pain and my left knee is hurting and throbbing. I have to be on Coumiden during my 6 month therapy due to previous PE. Before this all began I was in the best shape of my life! I’m 55 and feel very old today. Anyone else out there had these symptoms and concerns? Thank You!
July 26, 2013 at 11:43 pm
Sarah my cipd started in December 2012, while splitting firewood my hands started slipping on the axe and carrying the wood indoors was getting harder. My doctor tried everything for 5 months(last thing was mri of the brain) then referred me to a neurologist who ordered a spinal mri both negative. My muscle weakness had progressed and I started limping, my neurologist then did the nerve conductivity test and a spinal tap which showed abnormal protein level his diagnosis is cipd but a mild variation.
I had the plasma therapy july starting on the 9th, I walked into the hospital with a cane and walked out without one. In the short time since the therapy my strength is back, limp is gone and i feel very good only problem is leg fatigue at work (8 hours standing sucks). I am lucky that my doctors responded to my symptoms quickly and got me the treatment I needed, hope you get results like mine, I truly endorse the plasma exchange I felt better 3 hours after 1st treatment.
AnonymousJuly 27, 2013 at 6:10 pm
Like GH and harryswope, mine came on quickly. Here’s how it happened for me.
I’m a 52 year old man who’s been relatively active his whole life. In November 2012, I began improving my diet and exercising. I was working out regularly, gaining strength and losing weight, gradually. About 5 months ago, I started noticing pain in my hands and chalked it up to excessive dumbbell weight. I eased up a bit, but noticed soreness in the legs and back and shoulders too. I couldn’t sleep on my side because my shoulders hurt too much. There was tingling in my thumb and index finger of my right hand and numbness began to creep up from my calves. I felt like my back was all knotted up and I sought chiropractic and massage therapy. One day, as things were getting worse, the chiropractor asked me to walk on my heels. I couldn’t.
I was referred to a neurologist, who was puzzled, after 5 MRIs, blood tests etc. I still had reflexes despite profound weakness in the feet, hands, and legs. I had been doing a lot of research (thank you gbs-cidp.org) and began inquiring to my doctor about GBS/CIDP. Finally, after a spinal tap, myelogram, and CT Scans, the doctor retested my reflexes. Now there were none.
A month ago I had a loading dose of IVIG, 2gm/kg over three days, and last week my first maintenance, 1gm/kg, dose. Fortunately, I’ve handled the treatment well, but haven’t really seen any improvement, so far. I suffer foot drop, weakness in the legs and hands, massive muscle loss, lost balance, burning skin pain, difficulty gripping anything, and sleeplessness. I take Tramadol for pain and it seems to work well. My neurologist prescribed Gabapentin, but it’s had no effect on the pain.
I sleep a couple hours in a row, in my recliner downstairs, though I may fall asleep in my bed initially. I now walk with a cane to maintain balance, use a shower seat and handheld shower. Recently my hands began contracting, pulling my middle and ring fingers across my palms. My finger tips are numb, making it difficult to type, tie my shoe laces, or button my shirt. There is something called Dupuytren’s Contracture that is believed also to be an auto-immune issue. (http://www.mayoclinic.com/health/dupuytrens-contracture/DS00732/DSECTION=causes)
The infusion nurse explained that results from IVIG therapy can run the gamut, from nearly instant results to having to wait until the first three months of treatment are complete and measuring strength to see if there’s been any improvement. If there’s improvement, they consider the treatment to be effective and the insurance company (I have United Healthcare) will approve continuing treatment.
I wish the best for you, Sarah. Keep us posted.
AnonymousAugust 2, 2013 at 2:19 pm
My story seems typical of many I have seen. It started about eight years ago with some numbness in my feet. A neurologist diagnosed it as “idiopathic” (doctor speak for we have no clue). It gradually got worse impacting my gait with some finger tip numbness and weakness. After about five years of progression and frustration with mediocre neuologiasts was referred to University of Colorado Horpital where it was diagnosed as CIDP.
Along the way they tested me for multiple forms of cancer (bone marrow, spinal taps and other wonderful events). They have found high levels of large cell protiens (IgG, IgM and Kappa) which are monitored every six months. They have not changed over the last three years. I hve found some literature that indicates a correlation between CIDP and those protiens but do not know which came first.
When first diagnosed they gave me predneson but that had bad side effects and actually made the symptoms worse. I then started high dose IVIG treatments monthly which has stopped CIDP progresion. There has been some minor improvement but very minor. I do tolerate the IVIG well with no side effects. I am happy with IVIG to this point and assume it will need to be continued to keep the CIDP under control.
I am curious about Plasma Exchange when compared to IVIG but have little insight as to which is better and relative risks.
Good luck with your treatments.
AnonymousAugust 13, 2013 at 9:56 pm
I have had 8 rounds of IVIG – no improvement. Now my neuro is talking about plasma exchange. Tell me something about your previous symptoms and recover with PE. I am very interested to try this if a stronger dose of IVIG 5 days in a row does not help my fatigue and walking/balance problems. Anybody elsr have similar improvements with plasma exchange(PE)?
Thanks for your reply.
August 14, 2013 at 11:25 am
rickd my cidp started as hand weakness then leg fatigue and of course balance issues along with sporadic sharp pains. I had 3 treatments over a 6 day period and I felt improvements rite away balance came back fast pain took a few days after treatments to end.I have made great progress since the treatments and based on my experience I would think plasma exchange will help you. I stayed in hospital for the treatments and was bored all the time 3 hours of treatments every other day made for a long week, I had a groin catheter I think that’s why I was not treated as a out patient.
August 14, 2013 at 8:07 pm
Plasmapheresis helped me the most. I had some improvements after a couple days of treatments. In total I had about 75 treatments over several months.
They installed a tunneled catheter (double line) in my neck and the connections went under my skin and came out in my upper chest. One should stay away from taking showers while this is installed to help reduce the risk of infection. In my case (quadriplegic at the time) showers were something I could not do anyhow.
Had I known at the onset of the disease what I know today about GBS/CIDP/MFS (from my personal experience) I would have started treatment with 3 days of Plasmapheresis followed by about 10 days of IVIG. Unfortunately for me, they did the reverse and the bad anti-bodies were alive in my blood and continuing to do harm to my nerves (Myelin). I consider this to be the main reason I became a quadriplegic.
From my non-medical view the bad (GBS/CIDP) antibodies are already in your bloodstream while you are being treated with IVIG. IVIG stops your auto-immune system from releasing more into the blood stream, but it does little or nothing to kill the bad guys already released. Unlike IVIG, Plasmapheresis will remove (filter out) the bad guys from your blood stream, but won’t do much about stopping your system from producing more. One pass of Plasmapheresis won’t get all the bad guys because some are too deep in the veins at the time. Since the blood is always circulating, the bad guys will soon show themselves again and that is why Plasmapheresis works better after several treatments.
Today I am a paraplegic and able to participate in this forum, thanks to a combination of Plasmapheresis, IVIG, and Prednisone. We are the fortunate ones here on this forum! There are so many GBS/CIDP/MFS sufferers who cannot even type on a keyboard, let alone view the screen. I know, I was one of them for a couple years.
AnonymousSeptember 4, 2013 at 10:59 am
I am new here as well as new to CIDP. I have been suffering with this condition for 15-20 years but was only diagnosed in January 2012. It was a long road. The tingling and numbness is how it started, and I thought THAT was bad. Then the pain in my neck started. Now the muscles from my left elbow to my neck lock up and turn to stone. Now I know what pain is. It started about 45 days ago and today is the first time I’ve had any relief. There is still a lot of discomfort and some pain, but nothing compared to the last month and a half.
Now the important stuff. Could anyone please tell me what I am looking forward to? I am prepared for the worst so please be honest. I do know that it’s better if diagnosed early, but what about after 15-20yrs.?
AnonymousSeptember 6, 2013 at 3:30 pm
I haven’t been diagnosed yet but I’m pretty sure it’s CIDP. 6 years ago I thought I was having an allergic reaction to Frontline for the dog. So I was careful from then on I didn’t tough the dog for a few days. I started with tingling and burning on my scalp and face which lead to my arms. Then within a week it went away. 2 years ago I f=got it again and I didn’t use Frontline. Same symptoms but it lasted longer and my face was really bad. I went to the D and he said it was Bell’s Palsey and gave me steroids. It went away within 2 weeks. This May I got campylobacter jejuni (a bacterial infection of the gut). A week later the CIDP started again. My feet felt dry so I lotioned them not thinking it was a symptom. A few days later I felt like there were bugs in my hair creeping aroung. I had my husband check and there was nothing. Weird I know! Then it turned to tingling the burning. It started to go into my arms a few days later. I went to another doctor thinking it was Lyme’s. She did a bunch of blood work and a CT scan and came up with low Vitamin D and nothing else. A few weeks later it started working into my feet. Burning between my toes and head aches. I went to another DR and he did more test. This time I had low liver functions. He suggested an neurologist. I’m now scheduled to go to Mayo’s in Rochester the 19th. I was lucky they accepted me and very happy because they work as a team and are supposed to be good! Now I wait and in the mean time weakness is starting and well as cramping in my legs. It’s progressing VERY slowly but now going away like it has in the past. I’m pretty sure it’s CIDP from all the research I’ve been doing. This site has helped a lot! I hoping in a few weeks I’ll know for sure!
AnonymousSeptember 9, 2013 at 1:33 am
My husband was diagnosed with CIDP in July after a quick succession of symptoms. When we look back we can see that it probably started last fall when he started complaining about glare when he drove and had to start wearing sunglasses. The light sensitivity was followed with tiredness and fatigue, and then in April I noticed that his right foot seemed to lag and turn outward a little although he did not notice this and it didn’t affect his gait. In May his toes became numb and cramp. We thought it was diabetes, and indeed he got that diagnoses a few days later. What was puzzling to our doctor was why the neuropathy was getting worse as his blood sugar was getting better, and his blood sugar wasn’t that bad to begin with. Over the next month he had a MRI which showed some damaged disks and we were sent off the an orthopedic surgeon. That doctor noticed that my husband could no longer stand on his heels and his balance was greatly impaired. Not convinced it was pinched nerves, he ordered a nerve conduction test. During the 3 week wait for that test, his gait severely worsened along with the cramping in his feet, and he no longer had any reflexes from the ankles down. The conduction test clearly showed a loss of myelin not only in his legs and feet, but arms and hands. Our doctor tested for Lyme, B12, heavy metal exposure, and more. We were advised to see a neurologist as quickly as possible. Two weeks later (early July) the neurologist diagnosed him with CIDP. By that time he had drop foot in both feet, couldn’t stand with help, climb stairs, or even walk more than just a few feet.
He started IVIg 3 days later and has just had his third infusion. Luckily he is showing some improvement although it is not as profound as others have had. The realization has set in that this is going to be a long haul.
September 27, 2014 at 11:58 pm
Marlon, I am 32 and was diagnosed with CIDP at 27, I first started looking for a diagnosis at age 16 but it is likely my symptoms were present since age 8 or so. I have bilateral arm weakness, neck weakness, and my left quadricep is terribly atrophied. I responded some to IVIG and was feeling a much better sense of overall wellness until a couple months ago when my insurance company made me cut back my treatments. My physicians don’t think I will ever see a “full recovery” because I have had nerve damage for sooo long before getting treated. I also have terrible muscle pain in my neck and shoulders- I use flexeril when it gets really bad but I have learned to identify an oncoming “attack” early and I have found that hot packs (I mean almost burning) help alot. My muscle pain is set off by the cold so you will usually see me in a scarf or hoodie- no cool breezes for me!!
January 8, 2015 at 12:08 pm
I sit here with my legs, arms, shaking and stinging..thinking how fortunate I am that I can still use my hands & legs. But, scared to death that as I sit here waiting on someone to approve a co-pay assistance for my IVIG treatments..things seem to be getting worse. Not sure if it is our extremely cold weather or just normal progression of the CIDP. If some others would shed some light on how their disease progressed it would be greatly appreciated!
January 8, 2015 at 4:10 pm
P Grandma, objective tests of strength are the best indication of whether the demyelenation is progressing. A neurologist or physical therapist can tell just by pushing against your attempts to resist. To test yourself, you need weights or Therabands. A persistent loss of strength is the indication. Temporary weakness just from being tired is not the same thing. I don’t know how extreme cold figures in. Try to stay warm and do some regular exercizes and keep track of what you can or cannot do. If there is persistent loss of strength, you need to see your neurologist.
January 11, 2015 at 7:52 pm
Hi, I just joined this site. I would encourage you to keep being persisted in getting IVIG. I am 74years old. and have been getting IVIG for almost 20 years. it has keep me the same with few side effects. If you go to a Dr. office setting that gives infusions it falls under the medical part. I have Medicare and a supplement insurance and it pays well. I have been blessed. hopefully you can get help soon. Prove that you indeed have CIDP is done by nerve conduction test. It show the mylin sheath is being broken down this is important for Insurance companies and Medicare. Sonnie S
February 10, 2017 at 1:08 pm
I wrote a pretty long summary of my symptoms and road to recovery here: https://forum.gbs-cidp.org/topic/cidp-progess-and-retrosepction-long/
February 10, 2017 at 4:01 pm
Hi Buckeye, What a heck of a holiday present you received! I’m encouraged though that you are still able to walk and you haven’t even started on IVIg! IVIg could kick start something to help bring back your lost abilities and reduce the symptoms. If it doesn’t, you should look into Plasma Exchange with your doctor.
I had terrible side affects from Prednisone and as a result, have a hard time recommending that Corticosteroid unless all other means are tried first. But there are many who have not had severe side affects and benefitted from that treatment. If you go that route, plan to get off the drug as quickly as possible.
I too was on Warfarin because my autonomic systems were affected by GBS/CIDP/MFS. I developed Atrial fibrillation and had to be put on oxygen because my lungs no longer worked well. Unlike you, I became a quadriplegic for many months. It took about 18 months before I could use a computer again due to the paralysis. It was then that I found this website and finally learned more about the disease and what I should have done.
I feel sorry for the many GBS/CIDP sufferers who do not have access to the resources here. I wish there was a way doctors and hospitals could hand out info packets to those affected which included resource links to this website and others. Short of that, I’ve made it my goal to help as many people as I can who come to this site. It’s my way of giving back.
I was a semi professional tennis player before the disease hit, so I know that being in good shape means absolutely nothing to this disease. Although some may fare better than others fare and maybe recover faster due to their conditioning. I hope this is true for you.
We are all survivors here and wish you a quick and full recovery!
February 14, 2017 at 12:44 pm
Thank you to all who replied ! My next question is did anyone experience terrible knee pain and weakness? As well as difficulty picking things up and holding on to them. My knees and hands feel very stiff and hurt?? Not sure if knee is from CIDP or another issue. Beginning to be very difficult typing this. I am on Warrafin and I can’t begin IVIG until my levels are at a 2-3 range. I’m either to high or two low. Meanwhile I can’t start IVIG and my knees hurt more and are weaker daily?? Has anyone else experienced these symptoms ? Thank you in advance to all who reply !
February 15, 2017 at 2:20 am
CIDP will definitely make a person feel old. When my CIDP was advancing, I had pain in my legs for which I took painkillers. When I started recovery I went off pain meds and have never needed them again.
As the weakness progresses upward in the typical pattern, fine motor skills in the hands will be affected. I measured the progress of my CIDP by the loss of function in my hands, particularly my ability to operate my cell phone. Similarly for recovery, it was measured by what I could do.
February 15, 2017 at 7:50 am
Thank You GH!
Yes.. fine motor skills are getting worse. Dropping so many things. Difficult to use a knife and fork at the same time. Keep dropping meds! Difficult to type etc. No need for painkillers yet. I pray I don’t. Take Care
March 10, 2017 at 6:40 pm
I was just diagnosed this week. I woke up one morning in Dec 2016 and both my feet and hands were numb but tingling. It sometimes feels like my socks are wadded up around my toes. My legs are now numb and tingling to about four inches above my knees, my arms tingle and are numb to my elbows. I am now so weak I use a cane. I cant drive, need help into a store to get to a motorized cart. Yesterday was my last day of work – out on short term disability. Sometimes my feet and legs (mostly at night) are so tight, like they are being squeezed or packed into cement. i also sometimes feel like my ribs are being squeezed so tight. Full body vibration off and on like i swallowed a cell phone.. I am on gabapentin, and i am waiting for insurance approval for ivig…
March 10, 2017 at 7:14 pm
So sorry for your symptoms. I can relate 100%! I just had my first IVIG series therapy. Not much difference yet by I have 5 more months left and I’m hopeful the treatments work. I’ll be praying for you. God Bless
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