Cause of CIDP
AnonymousSeptember 7, 2006 at 2:50 pm
Does anyone know what causes CIDP? I saw my primary physician today, and he doesn’t know whether my condition could be cancer related (some remnant of a renal carcinoma back in 1998) or nutritionally related (I have an eating disorder). I don’t see my neuro again until the end of this month. My old neuro (whom I just started seeing in Feb of this year) hand a baby and moved out of town. She is the one who suspected that my CIDP was caused my some lingering malignancy. Meantime, my oncologist/hematologist (I also have a bleeding disorder) is scheduling a number of tests for me, including a test for lymphoma. He has already done a bone scan, and that came back ok.
I am sorry for being so long winded, but I am very confused right now. My primary is frustrated with me because my eating disorder is getting worse (I weigh about as much as (possibly less than) Nicole Richie right now – around the same height too). I can’t help wondering, “if I beat the eating disorder, will my neuropathy go away?”
The bottom line is, when you were diagnosed with CIDP, did the doctor give a cause?
Thanks (and sorry for rambling on).
AnonymousSeptember 7, 2006 at 2:59 pm
there is no know cause or trigger for cidp or gbs. there is allot of speclation, but no research has been done showing a common cause.
usually a diagnosis of cidp is something that is determined by process of elimination. they perform tests to rule out hiv, diabetes, cancer, etc. when nothing else is found and they perform a lumbar puncture to test the spinal fluid for elevated protein, or they do a sural nerve biopsy to see if demyelination is found – that’s usually when they are sure it’s cidp or gbs.
AnonymousSeptember 7, 2006 at 6:47 pm
There are lots of possible causes for CIDP. Here’s what I have been told, and found out for myself:
When I was not yet diagnosed, and the doctors were ruling things out, they specifically eliminated three possible causes of my peripheral neuropathy: HIV, diabetes, and IV drug abuse.
When I was first diagnosed, I asked the neuro what causes this condition. He said that it is auto-immune in origin, and that somewhere along the line my immune system had developed the ability to make antibodies that attack the nerve linings, possibly because I was exposed to a virus that had similar proteins to what myelin has.
After immune-modulating treatments had been tried on me for a year or so (really good effectiveness at first, then declining), the neuro started talking about looking for an underlying condition that might be causing the CIDP. The underlyiong condition would be myeloma, a cancer of the bones and blood, that would cause monoclonal antibodies to be produced, and these antibodies in turn would be what is responsible for attacking the nerve linings. As far as what causes myeloma, I don’t think anyone is too clear on that.
I don’t have myeloma, or HIV, or diabetes, or use needle drugs. That means the acquired autoimmunity hypothesis is probably still the best one. Otherwise, you could call it an idiopathic disease (doctor-speak for “I dunno”).
AnonymousSeptember 7, 2006 at 6:47 pm
I think that very few of us, or perhaps none of us, know what causes CIDP. We only have theory’s. I was healthy, I don’t know what caused my CIDP, but I strongly suspect that the flu shot played a part. My other theory that ties in with when the syndrome started would be laughed at.
AnonymousSeptember 7, 2006 at 10:06 pm
Thanks to everyone for responding. I can rule out HIV as a cause, since I was recently tested. I can also rule out bone cancer, as my bone scan revealed nothing. I am interested in finding out whether anyone was ever told that their CIDP was nutritionally caused.
I would like to know what the cause you think would be laughed at is. I don’t think that I would laugh at it (right now, I would believe anything).
I am so glad I found this forum. I’m just sorry that I can’t contribute to more threads. I hope to, once I learn a little more about my own case of CIDP and start undergoing treatment. Right now, I feel that I have really nothing to share, because I am so confused myself.
AnonymousSeptember 7, 2006 at 11:43 pm
OK, if you want “wild theories”, I have heard a few. Please don’t take these too much to heart (except to note what I say about the last one, how it may not be a cause or the basis of a cure but you should still pay attention to it for different reasons).
– heavy metal toxicity, maybe caused by mercury amalgam fillings in your teeth. Keep in mind that this gets blamed for a lot of things, and that the things that it gets blamed for don’t resemble mercury poisoning, which has a really specific set of symptoms, especially giddiness and delusions — not the typical picture of a CIDP patient!
– undiagnosed Lyme disease. Most doctors don’t rule this out with tests because it has a very specific presentation which is different from CIDP.
– emotional causes. There are a lot of different versions of this theory, ranging from “your illness is a metaphor for how you feel about your life” new-ageyness to some legitimate research being done examining the links between stress, the immune system and the nervous system under the academic banner of Psychoneuroimmunology. What I can say about this is that if I am not handling stress well, I get a setback from which it takes a lot to recover. If I can handle things better, I don’t necessarily recover, but I don’t get worse.
It is the “emotional causes” thing that makes me sometimes nag other people to find some form of counselling. Handling the emotional part of your life better may not cure you, but being terrified or depressed or angry can make you sick, especially when your health is already challenged by the illness and its treatments. A good counsellor — a member of the clergy, or a psychologist, or some other kind of therapist, or a peer counsellor, even an employment counsellor — can help you navigagte your way to a more emotionally healthy place. Look for someone who has experience with serious and chronic illnesses. Whatever you do though, avoid the kind of people who imply that you made yourself sick because of something you did in your life, or some behaviour or some feeling you held inside you. That sort of blaming doesn’t indicate the start of a good working relationship.
AnonymousSeptember 8, 2006 at 12:04 am
Hello again Chaya,
A doctor would not agree with my other theory, so I hesitate about mentioning it as a cause, but one of my infusion nurses agreed that it might be possible. I had made a move about three months before I started getting sick and the WATER in my new home was different. Drinking it caused diarhea and made me throw up until I changed to bottled water and stopped drinking the tap. Since it made me sick and then a few months later early signs of CIDP started, I sometimes wonder, could WATER do this???
AnonymousSeptember 8, 2006 at 2:10 am
CIDP is an autoimmune disease. Your immune system has started attacking yourself. There are supposed to be precautions in the immune system to prevent this, but somehow it broke down. There is a good bit of evidence that the tendency towards autoimmune disease is hereditary, but not the tendency towards any one particular autoimmune disease.
That being said…….
Once the autoimmune attack begins, the only way to stop it would be to eliminate all of the abberant cells in the immune system. If there is still one, it could replicate and start the process again. That is why most people are relapse/remitting, and why it is so difficult to “cure”. In fact only about 5% of CIDPers get total remission, and never get another attack.
As to why CIDP and not lupus, MS, Graves disease. diabetes. rheumatoid arthritis, or any of the hundreds of other autoimmune diseases? I don’t know. With GBS, many people say it is a very similar virus that has a similar presentation to myelin, and the similarity causes the immune system to malfunction. Immune wise, it is the “hot dog and a bun” idea. Each “virus, or infection, or invader” that you have an immunity to has a certain appearance to the immune system. The B cells have the antigens, or “the bun”. When a virus, or “hot dog” fits in the bun exactly, the immune system recognizes the culprit and organizes a response. T cells are activated and go in search of the culprits and start destroying the infection.
In our case the “infection” in the myelin sheath that surrounds our nerves. Since we have a lot of myelin in our bodies, the response can be quite active. When that happens, there is a rapid decline, and symptoms progress quickly.
The “why”, nobody really knows. They know “how”, and “what it does”, but not “why” in the first place.
Somewhere there had to be a failure in the immune system that allowed cells capable of destroying “self” to mature and live. They are supposed to be destroyed in the process of creating mature T-cells. Then they just float around, waiting for their “turn” to do their thing. What turns them on is a mystery. If we could turn them off, we would cure the disease.
So, following that, I wouldn’t think that a cancer would set it off, nutrition, or the like. I would think that your overall health would however contribute to the severity of the disease’s activity. The weaker you are, the less able you would be to resist. The more stress you are under, the harder it would be, if you are sick from something else, your immune system would be busy there as well. I think all of those things have an effect on youroverall health, and likewise your ability to deal with CIDP. But I don’t think they cause it.
There are many other peripheral neuropathies that get mis-diagnosed. Many of them present similar symptoms. The Doctors really have their hands full in getting the diagnosis correct. I went to several neurologists until I got the right diagnosis. Having an experienced neuro is pretty important. As far as GP’s go. I doubt many General Practitioners have seen GBS or CIDP. The rarity is 1 or 2 per 100,000. They may go their whole careers and never see a single case, let alone treat one. I don’t blame them for not knowing how to deal with it. And they might not have good information. I do believe that I know much more about my condition than my GP does. But I don ‘t hold it against him.
The best we can do, is get an experienced neuro, learn a lot ourselves, and try to keep ourselves as healthy as possible. In other words, try to limit any aggravating circumstances. We can learn to deal with it. Maybe not stop it, but we can deal with it.
AnonymousSeptember 8, 2006 at 5:13 am
My dear friends, please, please don’t take this as patronising, it is genuine and from the heart. I have come nearly every day for four years to this site and to GBS.org.uk. In the early days there was comparatively little knowledge among patients about GBS/CIDP so I did what I, possibly arrogantly, called a morning cybersurgery. Now the extent of knowledge, not only of the two diseases but of many other related disorders, immunology, physiotherapy, psychology, therapeutic programmes etc. is enormous. I realise that happily I am becoming superfluous. Perhaps us chronics who have travelled together for some years now do have something to offer that is of use to others. DocDavid
AnonymousSeptember 8, 2006 at 5:50 am
Liz,I almost fell out of my chair when I read the word water. About a year after my symtoms began, I received a letter from my water company stating by state law they were required to issue their test findings for the previous two years. It said (may cause nerve disorders). My doc said there was no relation, but I still wonder.
AnonymousSeptember 8, 2006 at 8:13 am
Chaya – you said your doctor was going to take a lot of tests, and with your eating disorder, I guess one of the first tests to be taken was to check your B-12 vitamin level. B-12 deficiency often causes neurological symtoms resembling CIDP.
No, they did not give me any explanation about how and why they gave me the diagnose CIDP. Everything I know about this disease, and it’s “cousin” antiMAG IgM PDN, I learnt on the internet, especially here and the UK forum.
When it finally turned out, from the work of a hematologist, that I had the latter illness, I could get help, because in this case they know what part of the immune system causes it, so they can target the medication at something specific. Of course such a medication also has to exist. None of the CIDP treatments helped – in the long run -, but the hematologist didn’t give up, and thanks to him and Rituxan, I’ve been on the mend for more than a year now, and even though it is a slow process, it’s an upward process!
If your lymphoma tests come out positive, or you hear the diagnose MGUS mentioned, don’t despair, these are cancerous diseases, but not of the worst kind – AND there are a lot more good treatments for cancers than for CIDP!:o
antiMAG IgM PDN originates from a cancerous element, so that’s why the chemptherapeutical drug Rituxan did it for me.
AnonymousSeptember 8, 2006 at 10:10 pm
Thanks to everyone for the amazing information. Lately, I have been very stressed out. I also suffer from depression (both related to the eating disorder). I would like to learn more about autoimmune diseases. I’m trying to understand what is happening to me and why. Hopefully, I don’t have lymphoma. So far, all my tests have been negative, including a CT of my remaining kidney and a chest x-ray.
The water theory is definitely not to be laughed at. It made me think of the movie Erin Brokovich (sp).
Again, thanks for all the amazing information.
AnonymousSeptember 9, 2006 at 9:07 am
What immune-modulating treatments had you been on for a year before you noticed a decline.
Have you tried others since your decline? Have they worked for you?
I was dx. last Nov. So far the Cellcept 1000mg 2xs per day and IVIG 60gms every 30 days have kept me stable. I do most activities I did before CIDP.
Of coarse I am wondering what the future may hold. It is very interesting to read these sites and realize the variablity of the disease.
AnonymousSeptember 9, 2006 at 12:11 pm
Please don’t laugh at the water theory, it’s worth it to get your water tested independantly and doesn’t cost much. Even if your city or town publishes their water test results that does not mean that your individual house might not have problems, particularly if it is an older house. I have worked in a utilities department and seen the difference between one house who’s water was the color of beer and the house next door on the same line was fine. In my house we use a well and had the water tested when it started smelling funky and looking orangish – sure enough we had too much iron in the water, after 10 years of it being fine. The company that installed the filter recommended that we replace all the filters in our faucets and washing machine as things can build up and grow on them. Frankly I didn’t know there were filters there until we unscrewed the faucet and saw the nasty gunked up filter up in there. Finally, as we live in a rural area there is always the chance of some nasty pesticides/herbicides or someone’s septic field running into our well water. While our well is 300 feet deep some chemicals can seep fairly deeply into the soil so it’s worth periodic checks to make sure your water is filtering out the nasties.
AnonymousSeptember 9, 2006 at 1:52 pm
[QUOTE=DavidBod]Perhaps us chronics who have travelled together for some years now do have something to offer that is of use to others. DocDavid[/QUOTE]
I think you have stumbled (no pun intended…:rolleyes: ) across the silver lining for CIDP… Thanks…!!! 🙂
AnonymousSeptember 9, 2006 at 8:06 pm
What immune-modulating treatments had you been on for a year before you noticed a decline.
At first I was doing well with IVIG only. Then the effects of an infusion started wearing off at 6 weeks, then 5 weeks, then 4 weeks, then I started losing ground between infusions and not gaining it back. While this wasw going on, I was put on a steroid sparing regime, 40 mg Prednisone and 200 mg Azathioprine, without much effect. Around the same time I had a skeletal survey, blood tests and a follow-up visit with a hematologist to rule out multiple myeloma. Now I’m getting plasma exchange twice weekly, which seems to help, and I expect to be taken off steroid sparing and possibly put on cyclophosphamide.
The “underlying cause” is still a mystery. Although we know that the symptoms are because of immune system activity, the mystery is in why some people acquire auto-immune problems and others do not.
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