Stumble It!Sep 18 2008
A little bit about CIDP
One of the things I’m endeavoring to do with this blog is to educate people on the various demyelinating diseases that exist. Since I have CIDP, I figured I would start there.
What is CIDP?
CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy. It is the chronic version of Guillian-Barre Syndrome. CIDP, much like many other diseases that cause demyelination, is an autoimmune disorder. It’s not fully understood by the neurological community at large what triggers Chronic Inflammatory Demyelinating Polyneuropathy, although it is believed one possible trigger is catching the flu. The more acute form of Guillian-Barre Syndrome has the same trigger.
There are many different variants of CIDP, however they all fall under the same general umbrella. Like most diseases that cause neuropathy, they have similar symptoms. The differences lie in severity of some symptoms over others, presentation of the disease, and progression of the disease.
What does CIDP do?
CIDP attacks the myelin sheath that surrounds your body’s nerve endings. The myelin sheath is a soft, white, fatty material. It protects the nerve endings. It also acts as a conductor, allowing the nerves to send messages from the brain quickly around the body. As the myelin sheath is destroyed, damage is done to the nerves. This damage prevents messages from being sent quickly, if at all.
One of the reasons it’s suspected that CIDP can be brought on by a bout with the flu is because the cells that make up the myelin sheath are microscopically similar to flu cells. It’s theorized that the flu virus can trigger a hyperactive immune response from the immune system. In an effort to kill the flu virus and keep you healthy, your immune system goes on the offensive, not only attacking the flu cells but any cell that resembles it.
Unfortunately, once your body identifies the myelin sheath as an enemy invader, it will always recognize it as an enemy. There is no way to completely rid your body of the antibodies once they have been formed. You can only attempt to minimize and heal the damage already done.
What are the symptoms of CIDP?
The most common symptoms of Chronic Inflammatory Demyelinating Polyneuropathy and its variants are:
- Tingling, most often in the hands, arms, feet, and legs
- Numbness
- Muscle spasms
- Muscle cramps
- Loss of reflexes
- Problems walking
- Weakness
- Fatigue
It’s not uncommon for people with CIDP to have other neurological problems such as skin that’s sensitive to the touch and issues with incontinence, though.
How is CIDP diagnosed?
Because Chronic Inflammatory Demyelinating Polyneuropathy is a rare disease, there’s no one set testing protocol like there is for Multiple Sclerosis. There are a series of tests that a neurologist can do but it’s often by a process of elimination that someone winds up with a diagnosis of CIDP. Here are some of the more common tests that can be performed to test neurology function:
- EMG/Nerve Conduction Studies
- Lumbar Puncture
- MRI
- Reflex and Balance Tests
I will be going into greater detail on what each of these tests entails and what they measure in future blog posts.
What is the treatment for CIDP?
Right now, there aren’t many treatment options for Chronic Inflammatory Demyelinating Polyneuropathy or any of its variants. The most common are:
- IVIg
- Plasmapheresis
- Steroids
- Chemotherapy
I will be making detailed blog posts about CIDP’s variants and treatment options in the days ahead.
Should anyone have any questions, please feel free to ask them. I don’t pretend to know all the answers but I’m happy to research whatever I need to. If you’re feeling a little shy, a good online resource of information and support about CIDP can be found at the GBS/CIDP Foundation International .
I think my daughter who has CIDP may be suffering incontinence as a result, but I can’t find any literature no it. It is mentioned about. Is there some place you can direct me to learn more about this symptom? Thanks
Is a Neurologist the only kind of Doctor that will test and treat this or are there other kind of Doctors or specialists?
I was Dx with CIDP ten years ago. I had every symptom mentioned including no taste, constant falling, trouble with my eyesite at times. I was only 30 years old. I had every treatment mentioned, IVIG therapy, plasma exchange, mass doses of prednisone. I only felt somewhat better.
My doctor did a four-sided chest x-ray and discovered a Shwanoma. (A nerve tumor) A neurosurgeon removed it with a very serious surgery and with a little physical therapy I am completely normal. No side effects from anything. It mimicked CIDP to a tee. I also had a extremely high ANA count. I receive a chest x-ray yearly.
I was just recently dx with CIDP and I will probably be starting my PP in the next couple of weeks. My neurologist states that since I am so weak that they decided to do PP first and then do IVIg. Does anyone have any thoughts on this. Also, as of now I can’t walk and I do not work. I was wondering if anyone knew if I should file for social security. Any help would be appreciated.
Pam M.
Dave:
I have a friend whose husband has been diagnosed with GBS/CIDP. She would like to see a UCLA MD, if you don’t mind…what is your doctors name? At least it will give her somewhere to start.
My wife was dx with cidp back in january. She has ups and downs no possibility of working. Her doctor thinks she can work but he does not seem to hear or understand what she goes throgh in a day. A simple walk around the yard tires her out to the point that she can bairly move the rest of the day. She has filed for disibality and has been denied on the fact that she can get a less mentally strenious job (dumb asses it is a physical disorder) from what i’m told they deny everybody the first time you apply. we are still working on it. Her doctor is not very helpfull or informative. (i think he is a quak) he has left her run out of her predisone on several occassions (he was to call it in and forgot). I think that they are pretty much clueless on the disorder. any one with any help or info would be great. thanks
I also was diagnosed with lewis sumner/cidp.I have ivig treatments.Alot of numbness in left foot toes and side of leg.Right hand same thing migranes alot and weakness and fatigue.I have ivig treatments eery 3 weeks.
Barb has since changed doctors with the help of cidpusa. They put us in contact with a doctor that can deal with this. Although she can’t get in untill the 22 of july we decided to take is since her other doctor had no idea. It was not quick enough we had to take her yesterday to Lewistown Hospital in Pennsylvania because it was slowly going up her neck. They had no idea what to do and raised her predisone 10 mg. I was not satisfied with that and today took her to penn st. Hershey Medical Center. There they found the doctors that could handle it and immeditatly ammitted her for IVIG treatment. They say it will be a 3 day stay. We’ll see i keep you posted. Hay anonymous the migrains are from the ivig. When barb had her first treatment they told her she would get them and offered her pain meds. She said she told them tylanol would be fine. They said not for these headaches you need morphine. Must be pretty intense.
jason,
who is the doctor they referred you too, who gave you an appointment for Jul 22???
i also was diagnosed with cidp in march 2009 i have ivig treatments every 4 weeks. my doctor tells me this disease has to go into remission eventually although they can not tell u how long that will take everyday i try to find something i could not do the day before even if it is turning on a lamp the littlest thing it helps remind me that i am going to get better and how far i have come already i wish everyone the best of luck i know how hard it is to become dependant on everyone for everything and how difficult facing that reality is thank you all for sharing
I was diagnosed with CIDP in March 2009, but I hade lower back pain since July 2008. The pain was so bad that I couldn’t sleep. I went to 7 different doctors over that 6 months, including a Pain Management specialist. I finally found a neurologist who knew what I had. To be sure he had me get a Spinal Tap and did a nerve conduction study.
By this time I could barely walk, I was numb from the waist to my toes, let alone get out of bed and get up from the toilet without help (my wife installed the handicapped bars). I had to use a cane to help me walk. The neurologist put me on prednisone in March and I began getting better. He stopped it in June. I began getting better, the numbness is from the knees down, and sometimes only the feet. The ‘electric shocks’ in my legs are fewer, but the pain from them is more severe, because the feeling is back. I was just able to compete in dog agility with my Dalmatian, something I haven’t done in a year.
Forgot to say that I still need the cane to get up and down stairs and I still walk with it because I still occasionally lose my balance, even after PT.
Hi, i was diagnosed in 2000 when i was 21 with gbs, then in 2005 with Cipd when i suffered a seriious relapse…I have continued to suffer up and down, it varies all the time. Treatment/care of - up untill 2008 was pretty bad to be honest and now i am with a fab neurologist - a doctor who actually listens, and try’s to nib in the butt before my relapses get severe. Unfortunately today when i saw my specialist he feels that ivig isnt really much benefit to me - only minimal effect now, that is, as opposed to in 2005 when it had a remarkable effect - but then could that have been because of how severe i was at the time of administration of the ivig? however, he seems at a loss of what to now explore. I have had prednislone before, i dont ever want to go there again! Just a case now of, if i feel i am getting anyworse - to see him - though not sure what they can do now? I am due to start my PGCE next week so i am hoping this is going to give me some positive focus - after all, life doesnt have to come to one big hault, does it :O?
I was diagnosed in December 2008 with CIDP when I was 27 years old. It started mainly with upper body weakness and some tingling in my toes. It got so bad that I couldn’t unlatch the seat belt on my child’s car seat, let alone hold her. I was very fortunate to see a neurologist immediately. He started me on 60mg of prednisone (hate this stuff…really!!) everyday for about 2 months and then tapered it off. By April, I was off all meds (this was my own stupidity….I stopped taking them when I felt stronger…). Anyway, I went through the entire summer feeling better than ever! I started noticing my weakness returning in July and made an appointment with my neuro. After he told me what I poor decision I made by not taking my meds, he gave me the option of starting the steriods with a low dose or high dose. I opted for the low dose. I took 10mg everday and ended up going up to 30mg because of my weakness increasing. When I noticed that it wasn’t getting any better, I contacted my dr. and he put me back on 60mg of predinsone as well as 100mg of mercaptopurine. I started taking both meds as directed and did so for 2 months. I thought I was getting better, with the increase in meds until one day I went to get out of my car and fell down. This was new. I had never experienced the leg weakness. This would be followed by not being able to run/jump, climb stairs, get off of a toliet, standing from sitting, getting off the floor, picking up my daughter from her crib, fastening buttons, getting dressed, writing, ect. My doctor then told me of the IvIG treatments. So 3 weeks ago I had my first round of 5 treatments. They worked wonders right away. I feel pretty close to 100% strength wise, but my hands shake a lot. The dr. says that’s from the prednisone. I didn’t know until my follow up appt. that the Ivig would be “Out” of my system in about 3 weeks. So right now we are waiting to see if I am going to relapse or not. This is the confusing part for me. Has anyone else been through this same scenerio? Any thoughts of what I can expect or the likelyhood of a relapse?
I was diagnosed with gbs back in November of 2008. After recieving plasma pheresis and spending a month bed ridden with no improvement, (in fact my condition was worsening) I was started on IVIG. I saw instant improvement. A month at the hospital was all I could stand. I was still unable to walk, but I left the hospital against my doctor’s and family’s wishes. After a few weeks at home I began to get very weak again. I was re-checked into the hospital for three days and more IVIG. Went home and saw more improvement. I was now able to stand, but again I became weak. I completly relapsed. My doctor then diagnosed me with cidp because of the relapses. My doctor had me treated with ivig every two weeks for a month, then he spaced it out to once a month and three weeks into that month, I relapsed yet again. so now I am currently receiving ivig every two weeks. instead of spacing the treatments out we are just going to cut the dose back every so often. A year has passed and I came back to work last week. I am a police officer. I am still working on strength issues in my legs. I am only doing desk work for now. I hope to return to routine patrol work by the new year. I am scared though because I am still receiving treatments and we are going to cut the dose in half on my next treatment. I can’t afford another relapse. I have no built up sick leave and I’ve spent all my long term disability leave. Another concern I have is fatigue. My muscualr strenght is almost back to normal, but I fatigue very easily. This has been a long hard road and given the chronic nature of the disease I fear there are still hard times ahead. My heart goes out to all who have been diagnosed with this disease. God bless.