CIDP – early detection, remission, & relapse (an old thread – but really good) 5 part

vtsullivan
Senior Member
Registered: May 2004
Location: Burlington, VT
Posts: 154
Just wanted to chime in that there is hope. In my case, the IVIg worked very well. After a year of treatments, my doctor has declared me in “complete remission.” I have no symptoms, and I can do all the activities that I did pre-CIDP.

I agree that a relatively early diagnosis was key. The literature that I’ve read suggests that, if CIDP is not treated early enough, the damage goes beyond the myelin to the nerve axons themselves. I guess the axons cannot regenerate as well as the myelin can.

The fact that you’ve been diagnosed early, are young, active and healthy otherwise are all points in your favor. I would be very optimistic.

Of course, the word “remission” is not the same as “recovery.” This is a chronic illness and we can, and will, have relapses. I’m sure others who post on this board who’ve lived with CIDP longer than me can speak about relapses.

Hang in there.
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Brian Sullivan
Burlington, VT
hermit crab
Member
Registered: Nov 2004
Location: sask. canada
Posts: 95
I may be wrong BUT
My guess is that MOST that recover to near 100% just get to busy
living and leave this forum. Guess we can’t really blame them in a way, but it would encourage the ones new to this if they posted
the success stories.
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D.K.

limpy100
Member
Registered: Mar 2005
Location: ca
Posts: 30
time and patience
Honey

Its a hell of a thing to go from being “regular” as I like to say to being..different. I miss hiking so much and watched a commercial where some dumb lady was running for her credit card and all I saw was..she was running.. I was never fond of running but boy do I get what it is not to be able. I did pp treatments, chemo, steroids.. every pain pill they can give you.. Now I take neurontin religiously it eases the electric shocks and helps me cope. I am somedays good to go meaning walk like a dork but walk and sometimes in a wheelchair for months. I found ivig worked well for me when its every 30 days and it took 4 months to find that.. A small inconvienence. My doc said no I wouldnt get better..he also said I wouldnt get worse. I would have good days and bad ones. I didnt eave sad I left feeling at least I would have good ones. Please try hard to see how good those good ones are and to find one thing, just one thing, in your day that is amazing. I find this helps me a ton. I am 43 and happy to be living. I get scared like you must . Here we hold each other up. Somehow it makes it less frightening. Dont you ever be afraid to say you need a shoulder. We all have someone but having those who GET what your saying means a ton. It did for me and I know it did for so many others.

Wishing you all good things,
Linda
Dick S
Senior Member

Registered: Apr 2002
Location: Foothills of NC
Posts: 1481
Hermit crab may be right. If I remember reading some data correctly, 5% of cases go into spontaneous remission. Complete recovery, never see it again. The rest of us are in the 95%. DocDavid hit it on the head, two types. But among the two types, the severity varies greatly. You could be relapse/remitting who doesn’t relapse but every six months or so. Or you could be every three weeks. Your relapses could be so minor you might hardly notice them, or they might put you in the hospital. That is the part that is so confounding to the Doctors, why it is so different among everybody.

Early intervention does lead to less damage. Less damage keeps you healthier. Basically CIDP results from a foul-up in your immune system. Your immune system wants to attack your myelin sheath (the covering around your peripheral nerves). When this happens, the signal the nerve carries becomes lost or fouled up. It gets reported as pain, burning, numbness, tingliness, etc. Or if it is a muscular nerve, the muscle won’t work. You have cells in your body called Schwann cells that will repair the damaged myelin, if the immune system would quit attacking long enough. Hence relapse/remitting. Whenever the immune system gets the orders to “attack” The battle commences. It will continue until either a medical intervention, or your body figures a way to shut it off. In CIDP’s case, unless you are that 5% that goes into complete spontaneous remission, you will always go through the cycle. There is no cure.

That’s the hard news, the good news, is that if your relapses are light, and your treatment effective, your life can be fairly normal. I think Neurologists consider CIDP to be a treatable neuropathy.

I am on the other side. Mine is the progressive kind. It isn’t cyclical, it is just “on” all of the time. Fortunately for me, it is “on” slow, and the progression has taken years. But, I learn to live with it the best I can, as you will too. You will learn to recognize changes that will indicate relapses, etc.

Other things will come at you as time goes by, so don’t be a stranger. One thing we have done here is lived with CIDP. We can help you with that.

Dick S
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If it is to be, it is up to me.
Fred Martin
Member
Registered: Jun 2005
Location: Outside Atlanta, GA
Posts: 85
nrain98

Hermit Crab is probably right about the postings tailing off as recovery progresses. Being new to the discussion board, I have not had a chance to see but a few new situations posted and then follow their progress. It is interesting to see some of the older postings and compare them to my case and others posting.
It has been a real eye opener to read about the diagnostics in other parts of the country, and world. The good news is that many of the treatments work for many of the CIDP’ers, and new treatments are in trial as we speak, so it is encouraging to see some progress being made with our illness.

I don’t know what type work you do, but one of the things my employer allowed me to do when I was having trouble walking and standing was to let me bring my small electric scooter to the office as I did not have enough upper body strength to use a wheel chair. I got a small fold up four wheeler that weighs only 65 pounds including the battery. Will go up to 10 miles on a charge and fits easily into the car trunk. Recharge only takes a couple of hours. Put a bike bell on it for blind corners in the office and was able to zip around with no problems. It kept me mobil until my recovery reached the point where I could work without it. Only needed it for a few months, but still use it to go to car shows, antique/flea markets, etc.

Hope your are making good progress with your treatments and recovery. Stay positive.
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fredaci
extremity
Member
Registered: Jun 2005
Location: Richmond, Tasmania
Posts: 50
Metabalism
nrain98,
I guess you can see by the postings, everyone has a different degree of stabilty, even in case of the chronic/progressive.
In my case, I nearly died from IVIG in hospital (it seems I was allergic and they didn`t think to check) so there is a lot that has to be considered, with your early diagnosis, you have the upper hand and a good one at that, DO NOT allow them to take a biopsy, for if you have a positive outcome, you will no longer have that nerve, besides, they only use it to further the ends of study and the cost to you would be great.
Secondly, don`t treat the Doctors as if they know what they are doing, ask questions, be sceptical and always post your procedures for advice from all of us who have been through this, storys will vary, but that is the nature of this curse and NEVER forget, that your metabalisim (immune system) is not the same as the guys in the next bed or posting.
Stay positive because you are young and obviously fit, I was 44 when I found out I had CIDP and had been as fit as a bull, but this curse has a way of leveling the playing field regardless and the fatigue is probably your worst nightmare as it is with us all.
Take comfort from the people on this site, as they will speak from raw experiance and the heart.
Think positivly and never give up hope.
Ron.

Fred Martin
Member
Registered: Jun 2005
Location: Outside Atlanta, GA
Posts: 85
I must respectfully dissagree with the posting from “extremely” regarding the nerve biospy. That ended up being the only way they could make an absolute diagnosis for me. They took a small nerve from the left foot on the middle outside area, They did it in day surgery, in by 7 A.M and home by 4 P.M. No sutures, only a butter-fly band aid. Yes I did sustain a lost of sensory feeling in that small part of my foot, but it does not effect me in any other way. There were no motor function losses due to the nerve biopsy in my foot. I was aware of the sensory loss for a few months, but now I don’t even think about it. My insurance company paid 100% of the cost as the surgery was done on an out patient basis. Health care programs vary greatly, so one would need to contact the pre-certification company used by his’her individual insurer.
My biopsy was done by a neuro-surgeon, so perhaps that made a difference. He also took a small muscle biopsy out of the left upper thigh, and once the insision healed, I never knew that was done. The muscle biopsy produced not motor or sensory loss.
Perhaps biopsies are like treatments. Each patient may react differently, but the biopsies also depend a lot on who has the knife. I have absolutely no second thoughts about my biospies, in fact was relieved because I then knew without question that the CIDP diagnosis was accurate.
I do agree however, that you must do your research and ask your doctor as many questions as possible to make sure that his/her diagnosis testing and treatments track what others have experienced over the years. The GBS/CIDP foundation is a good information source also. They have tapes/CD’s of presentations from previous symposium’s available for a small fee. I found several of these to be very helpful to me in the early years after my diagnosis.
Stay after it, stay positive and let us know how you are progressing.
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fredaci
Robert
Member
Registered: Jan 2005
Location: New Jersey
Posts: 53
I agree with you about the sural nerve biopsy. It is just like any other biopsy from any other part of the body. Just as with Breast biopsy, prostate biopsy, and biopsies of various lumps and bumps on the human body, it is usually a very effect tool for making the diagnosis. The trick with sural nerve biopsy is to have a good neuropathologist to review the sides, as well as to guide the surgeon in so far as exactly how the specimen is to be preserved and transported, and how the lab is to treat the specimen with regard to staining, etc. Without a competent lab and experienced neuropathologist, the biopsy is worthless. With these things, and good communication between the surgeon and the neuropathologist, the biopsy is an invaluable piece of data. After all, the pathologist is looking directly at the nerve, and can see whether the problem is demyelinization, or dying back of the axons, or whatever. The only downside is some numbness on the outside of the foot, which usually goes away after a number of months. It is a very useful tool to aid in the diagnosis of a disease which can have so many variables. Don’t deny yourself, or your doctor, of this valuable diagnostic entity, especially when there is any question of the diagnosis. Bob

suewatters1
Senior Member

Registered: Apr 2005
Location: Cornwall,Ontario,Canada
Posts: 290
I just had a nerve biopsy still recovering. Having my foot hurt like hell and getting electric shock on a regular basis. So I hope they find out what is wrong with me. The Surgeon who did the biopsy asked me why it was being done. I told him because my DR suspect CIDP. After the biopsy I asked the surgeon for pamphlet on CIDP and he told me to wait to see what I have he doesn’t think it’s CIDP. MY neurologist is 35yrs old my Neuro Surgeon is 70 yrs old. So I hope the 35yrs old know what she is doing.

Sue
Dick S
Senior Member

Registered: Apr 2002
Location: Foothills of NC
Posts: 1481
Nrain,

On the fairly quick diagnosis part. Any neurologist who diagnoses you with CIDP in less than two or three months is missing the primary position of the neuropathy, that it is chronic. The presentation of a demyelinating polyneuropathy, doesn’t make it chronic, time does. For it to be CIDP, the “active attack” has to last longer than 8 weeks.

Having said this, By the time you have an attack (depending on the severity), and you go through “some” tests, and they start to rule some stuff out, and then they finally get to CIDP, it usually takes a while. If you are severly incapacitated, the attack will be acute, and it will be called GBS. A GBS attack will stop, usually within 4 weeks, then a recovery period, with no more attacks. CIDP, the attack is USUALLY not as severe, but lasts longer. And will relapse. But frequently, it will take longer than eight weeks, from the time you start being attacked until you get a diagnosis.

If a Neuro “suspects” CIDP, and treats you for it before 8 weeks, he could confirm his diagnosis by your response to treatment. But he really would have missed the “Chronic” element of the disease. I hope, in your case, it does make a difference.

Dick S
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If it is to be, it is up to me.
dixielilly
Junior Member
Registered: Apr 2003
Location: florida
Posts: 17
recovery hope
I want to encourage you. My daughter was diagnosed with GBS at 15 and after a relapse was rediagnosed with CIDP. This began Nov. 2002. Initially she was wheelchair bound and had to learn to walk again with a walker and cane. She missed 6 months of high school. After the six months her response to IVIG was so dramatic that she has regained use of her body and is doing almost everything she did prior to her illness. She was a competitive golfer and she came back after not walking for 6 months and was named Golfer of the Year for two straight high school seasons. She is also active in musical theatre and is currently entering her senior year in high school. Her IVIG treatments have been stretched out to one every 4 months and she is in remission now with her strength being normal. To see her you would never know that she has this problem because she doesn’t limp or have any trouble walking. She is required to use a motorized golf cart when she competes so she doesn’t become over fatigued. Her positive attitude and faith have brought her much peace in this trial. We have to live one day at a time and we are not sure if this will ever completely go away. Her doctor seems to feel that she will burn out soon and be done with treatments – or be able to take one a quarter or every 6 monoths to keep her going. Hopefully, your youth and healthy lifestyle prior to illness will be to your advantage. We will pray for you and your recovery.

Dixielilly
Graham
Junior Member
Registered: Apr 2005
Location: Australia
Posts: 2
What you’re going through sounded a lot like the symptoms I had. For the first attack it took about 6 months (during which things started to get better on their own before I got a slight cold and then it all came back with a vengence) before I found a neurologist who was willing to try things (predisone) which worked wonders.

Within about 2 weeks I was feeling pretty much 100% (by the time I started the prednisone things were slowly getting better again).
I was then symptom free (although I also have another nerve problem called CMT which confuses the doctors a bit)
for the next 4 years.

Then it came back again, but this time predisone didn’t work so well (but I think it slowed it down a bit while doctors talked about what to do)
They then started my on IVIG, about 3 months after it started (I was convinced it was CIDP from the first attack but because of the CMT doctors need some convincing, even now they won’t give a definitive diagnosis).

Within about 2 weeks of that I was feeling pretty good again, its now been about 4 months since I had the IVIG and my feet below the ankle is still very numb (CMT can cause this but its worse now then it was before the last hit of the CIDP), and the tips of my fingers are still a little numb (which they never used to be before the CIDP).

I hope it never comes back, but if it does (hopefully many years from now), hopefully it won’t take months to convince the doctors again

I hope the IVIG works as well for you as it did for me.

Graham

espersen4
Member
Registered: Jun 2005
Location: Salt Lake City, UT
Posts: 41
Nrain,

I am also in my twenties. I was actually 19 when I first experienced symptoms and had a quick diagnosis as well. I started to feel weak in my hands and also thought it might be carpal tunnel. I went to the doctor and he ruled that out. He referred me to a neurologist and my appointment was scheduled for 2 months later. Over the weekend after seeing the doc, I got really bad really fast. By monday, I could hardly walk. My little sister was seeing our pediatrician that say so I went with her. He took one look at me and knew that something was wrong. I was not having trouble breathing so he felt I was ok to go home with my parents. The next day, I had an appoinment with the neur. I spent all day in her office having a spinal tap and other kinds of tests. She diagnosed GBS on wednesday. I started IVIG and returned to almost full strength by the following wednesday. I had lost strength so fast that she would have hospitalized me had I not still lived at home where someone could be with me 24/7. That was in January. I kept all of my strength until March when I experienced the same symptoms again. Because I had responded so well to the IV before, she treated me again. Then every four weeks, I would relapse and need another round of IVIG (only 2 treatments instead of 5). She diagnosed CIDP in April. I continued IVIG every four weeks until my wedding in August then we decided to try something more long term. I went on Imuran but still had to receive the IV until december when we switched to Prednisone. After I gained 50 pounds in 2 months and started to have heart problems, high blood pressure and signs of bone loss; the decision was made to change medications again. I started taking Cellcept in June. For almost a year I remained on Cellcept. No side effects and no relapses! So in March, my husband and I decided we wanted to have children. I went off the cellcept and have experienced no symptoms up till now. We are very hopefull that I have gone through my ordeal and will be able to have children without anymore relapses. I feel very lucky to be doing so well. I am very sad for the people in these posts that are still suffering. Good luck to all of you and I will continue to read others stories. Hopefully, I won’t have anymore of my own experiences to share!

nrain98
Junior Member
Registered: Jun 2005
Location: Southern California
Posts: 8
Thanks for the information
I wanted to take a moment and thank all of you who respond to my thread. I started the IVIG last Monday for 5 days. It was boring but I didn’t have really any side effects. By Saturday I was walking around like a normal person and had minimal numbness in my hands and feet. I actually woke up after walking a lot the day before and didn’t feel like had a charley horse or my legs were on fire. Today, I feel like I did 6 months ago, great. I don’t know if some of it in mental or the IVIG did all the work but I am thankful I am now able to stand on my tippy toes and I worked out today for the first time in over a month. I know compared to others that my symptoms while got worse very quickly weren’t as bad as other people’s so that is why I am thinking I will beat this.

I am now worried about a possible relapse. I am in the process of being approved for another IVIG probably in August. I don’t want my improvements to regress. Is there any way I can decrease the likelihood of a relapse or is it just random??? I am almost done with my prednisone and I am taking about 900mg’s of Neurontin, which I will be on for awhile. I just am not sure where I go or what I do from here.

Dick S
Senior Member

Registered: Apr 2002
Location: Foothills of NC
Posts: 1481
nrain,

Take the time to write down your activities, and how you feel. If you can walk around the block and not feel tired, or whatever. Keeping these notes will help you for a reference when you have your next round of IVIG in August.

If you do have another relapse (I hope you do not) you will have some notes to compare, “Within a week I was doing this”, or “I got tired doing that” “Today I walked up three flights of stairs at work”, whatever you did, or could not do. ” After walking the steps I was wore out for two days.” That information will be quite invaluable later on.

It’s easy for me to say that now.

Dick S
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If it is to be, it is up to me.
CathyB
Member
Registered: Jun 2003
Location: Alexandria, VA
Posts: 80

Welcome to our group! Sorry to hear you have CIDP but this is a great support group for all of us.

I was 8-10 months from first symptoms to diagnosis 5 years ago this month.. I’m lucky because I was diagnosed within 5 minutes of seeing a neuro and because I respond well to IVIG’s and prednisone (5 mg every other day).

I’m on IVIG’s every 3-4-5 months — depending on my symptoms between treatments.

Had a hard time at first working and having a life, but am in a good place now.

This is definitely a long term commitment that none of us want to have but this group is so supportive — we’ve all been through it.

Log on anytime.

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CathyB

kwackenhut
Senior Member
Registered: Apr 2005
Location: Western North Carolina
Posts: 125
My son was also diagnosed quickly.

He developed symptoms in the middle of April, and after extensive test (Xrays, MRIs, etc.) his pediatrition got him an appointment with a neurologist the very next day. His neurologist immediately suspected GBS and after a spinal tap he received his first IVIG treatments. He responded well at first–when he went back for his 2 week check he was at least 80% improved. They scheduled him for a final recheck one month later–but during the week before this appointment he began to have symptoms again.

When we were seen by the neurlogist this time he thought Adam had been over-doing it and recommended that he “take it easy” and scheduled a follow up in a month. That was on June 13.

Adam quickly declined and I called and got them to see him on June 29. At this time he was immediately addmitted to the hospital and after another spinal tap & nerve conduction tests his Dr determined that he has CIDP and he had another round of IVIG. He has an appointment on July 13, to check his progress & schedule more IVIG treatments. Unfortunately, there has not been much improvement–but I am hopeful that since we caught it early he will be able to return to school on his own two feet in the fall.
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Kim
Fred Martin
Member
Registered: Jun 2005
Location: Outside Atlanta, GA
Posts: 85
Kim,

Has your son’s doctor discussed other treatment options if the IVIG isn’t helping him? IVIG did not work for me, however when I was switched to plasma pharesis and prednisone, I got my strenght back with in a few weeks. Immune suppressants, certain types of chemo (cytoxin is one) and IV solumedrol have also been helpful to many with CIDP.

Get feedback from those of us who live with the disease, as we all share similar experiences and have collectively tried many, many treatment combinations until each of us hit on the one that worked best for our situation.

Best to your family and to your son. Stay positive
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fredaci
kwackenhut
Senior Member
Registered: Apr 2005
Location: Western North Carolina
Posts: 125
My son has only received two rounds of IVIG–this last one compressed into two treatments instead of 5. He has an appointment this Wednesday when we will discuss future options. Our doc is actually consulting with a neurologist in Atlanta who is supposed to be an expert. As we are less than 2 hours from Atlanta (the same as from Chattanooga, where our current Neurologist is located) we may end up going there.

Thanks for your support,
Kim
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Kim

Fred Martin
Member
Registered: Jun 2005
Location: Outside Atlanta, GA
Posts: 85
Kim,

My neuro is Dr William Stuart. He is the medical director of the MS Center in Atlanta and their clinic is located just off I-75 and Northside drive which is about 8 miles north of Atlanta. While the majority of the patients in this practice have been diagnosed with MS, the practice does have a number of CIDP patients. The facility has in house MRI, internal medicine MD’s and PT.

I have been with Dr Stuart for over 10 years now (he is my third neuro) and he always stays on top of the various studies, treatment protacols and published reports on CIDP. He is light years ahead of the other two neuro’s that treated me previously. Much of the treatment he has initiated for me was “ahead of the curve” so to speak and kept me active and working for nearly 10 years longer than was anticipated.

There is currently a clinical study in about five countries being conducted by Biogen, Inc. to test the benefit of the MS drug Avonex in the treatment of CIDP. Dr Stuart and I discussed this treatment over a year ago and I began using Avonex in April of this year in place of plasma pheresis and IV solumedrol every other week. So far the Avonex and Cellcept medications have keept my physical status in check.

Remember that CIDP patients respond differently to different treatment protocals. What works for one patient may not always work for another. Goodness knows I tried a bunch of different treatments until I hit on the pharesis and solumedrol infusions which did wonders for my condition.

Ask members on this site as many questions as you can think of, make a list and carry it with you to to new doctors and ask them one at a time and get specific answers to all of your questions. Because this disease is rare, it is amazing how little some of the medical specialists really know about it and what treatments are being used to fight it.

Best of luck to you and your son and here’s hoping your can get some answers and above all some help for his recovery. Stay positive and believe.

Fred
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Jody
Junior Member
Registered: Jan 2006
Location: outside Syracuse N.Y
Posts: 1
Many Thanks !!!
Not a new CIDPer but new to this site. What a Godsend all of you are. I have spent hours reading all of these posts and have gotten some amazing tips that have helped so much!! In the 7 1/2 years I have been battling “the beast” I have never met anyone else who could relate to the feelings, frustrations, treatments…. I just wanted everyone to know what a help you all are and how grateful I am. I look forward to more. Quick hx: started June ’98, relapsing/remitting untill sept ’05 now pretty much progressive, through IV solumedrol, prednisone now having IVIG every 4 weeks. Just finished 3rd round. Again, Bless You All !!! -Jody
Jerimy
Senior Member

Registered: Dec 2003
Location: Ann Arbor, Mi.
Posts: 2000
Welcome to the family Jody, I hope you find the information and support here that you need. Take care and glad you found us.

Jerimy
RUTH
Junior Member
Registered: Jan 2006
Location: FALKLAND ISLANDS
Posts: 3
Just been diagnosed, really want to talk to someone with CIDP

Hey! there my name is Ruth, I live in the Falklands with my husband Paul and our three boys. I started to suffer with CIDP in about August last year. We live in a small community of only three thousand people, after several attempts to diagnose me I was sent to see a specialist in Santiago Chilie, as our hospital is small and we have no specialists. I have been diagnosed with CIDP, I was commenced on IV IMMUNIGLOBIULIN, (Sorry think that’s spelt wrong!) it was fantastic and worked within a couple of days, I then developed Meningitus C. symptoms and was taken off it. I have now returned home to the Falklands commenced on oral Prednisolone 60mg a day. I am the only person in my country with this. I would really like to talk with anyone else in the same boat. I am normally a very active 30 year old woman, and I am finding this rather hard to deal with especially now the effects of the steroids are cutting in. I find the weight gain and facial swelling very disturbing. So if anyone can share their experience and feelingss with me I would be so greatfull. Thanks!