• Anonymous
      August 13, 2006 at 3:41 pm

      Just curious here if anybody knows why with CIDP we don’t show lesions on our spinal cord like Multiple Sclerosis patients as they also have the same attack mechanism i.e. the T-Cells attacking the Myelin Sheaths and secondly we have high Protein count in our fluid as our only parameter in in fluid where as my neurologist said MS patients show other immune cells in their spinal fluid so im curious whats different between our 2 diseases if anyone has studied both. Cheers.. Ericc….

    • Anonymous
      August 13, 2006 at 4:55 pm

      CIDP is a demyelinating disease of the peripheral nervous system and MS is of the central nervous system. You see white plaques on MRI of the brain (CNS) in MS, but not in CIDP. Both however are considered autoimmune illnesses. Just your immune system is attacking different parts of your body- kind of like immune system can also attack muscles (polymyositis), blood vessels (polyarteritis nodosa) or joints (rheumatoid arthritis). Sigrid

    • Anonymous
      August 13, 2006 at 8:31 pm

      Thanks for the response Sigrid…
      Although the peripherial areas are affected but doesn’t it still a disease of the central nervous system do to the ”High Protein ”count in our spinal fluid. Isn’t this protein the myelin thats being ripped off the axons in the spinal cord so the T-cells are attacking the nerves in the spinal cord and not actually attacking the nerves in my feet. Trying to learn about all this. Thanks again !! Ericc..

    • Anonymous
      August 14, 2006 at 1:23 am

      [QUOTE=ERICC]Thanks for the response Sigrid…
      Although the peripherial areas are affected but doesn’t it still a disease of the central nervous system do to the ”High Protein ”count in our spinal fluid. Isn’t this protein the myelin thats being ripped off the axons in the spinal cord so the T-cells are attacking the nerves in the spinal cord and not actually attacking the nerves in my feet. Trying to learn about all this. Thanks again !! Ericc..[/QUOTE]

      No, the demyelinating process in CIDP is limited to the peripheral nervous system. As to why spinal fluid has abnormal proteins, I don’t have a good explanation for that, but it may have to do with demylination of the peripheral nerve “roots” — that is only a guess on my part. CIDP is a disease of the peripheral nervous system rather than the CNS, by definition. In the literature I have seen it appears that elevated protein levels may or may not be present in CIDP, and may indicate a condition other than CIDP.

    • Anonymous
      August 14, 2006 at 6:51 am

      O.k guys ….i got it now..(recap). So for the last 10 yrs my CIDP has been in my ankles (paraylised) so the T-cells are actually in my ankles and not the spine or we would have lesions (like MS)….
      So now the mystery is what is this elevated protein in our spinal fluids and why is it there if the T-cells are not in it ?? Thanks again for this great forum and all the answers. I’m learning more here than from my neurologist….

    • August 14, 2006 at 9:54 am

      LOL, Eric…I’ve been able to educate some of the doctors that I have seen after being in this support group for a few years now. The good doctors appreciate it…the ones I don’t care for pass it off as ‘just something I read on the internet’.

      When one has a lumbar puncture, a sample of the person’s spinal fluid is collected. Known as CSF (cerebrospinal fluid – spelling?) should be clear and colorless. It surrounds the brain and spinal cord and works as a ‘buffer’. Changes from the norm indicate a neurological illness.

      Those with an infection in the brain/spinal cord as with meningitis will show bacteria or a higher number of white blood cells in the CSF. Lyme disease also will show these results.

      High protein levels are often a sign of a tumor in the spinal cord or a peripheral nerve disorder such as GBS or CIDP. (I have read several times that only 80% of those with CIDP will show a high level of protein in the CSF.)

      Those with MS will often have abnormal antibodies in their CSF.

      Luckily the CSF test does have different results which can point the doctors towards the right illness. It would be even neater if we were like cars nowadays and we could be plugged in somehow. We could have a system scan and have our problems pinpointed in a matter of seconds:D

    • Anonymous
      August 14, 2006 at 10:28 am

      Here is my 5-cents worth: I’ve been puzzled also about why some people get MS and others CIDP. Fortunately for us, there is something called the blood-brain barrier which normally prevents T-cells from entering the central nervous system and doing damage to myelin in the brain as in MS. In MS somehow holes are getting poked into this barrier allowing T-cells and probably other molecules to penetrate. I have not found any explanation yet of what triggers this following process: T-cells first stick to immunoglobulin receptors sitting on the wall of blood vessels (works like Velcro). Then they secrete enzymes that eat a tiny hole into the wall. T-cells makes themselves smaller to be able to squeeze through – and bingo, they are in.

      Bacteria and other microorganisms can to something similar. Here is an excerpt from the Encyclopedia Britannica:

      [I]Although the blood-brain barrier protects the nervous system from microorganisms, it may be damaged by bacteria, viruses, fungi, and other organisms. If damage occurs, resistance to infection of the nervous system is decreased. The major classes of inflammatory disease are meningitis and encephalitis (infections of the meninges, or covering membranes, of the brain and of the brain itself, respectively).[/I]

    • Anonymous
      August 15, 2006 at 10:12 pm

      Besides C I D P, I have been diagnosed with M S also, due to the leisions that show up on the M R I. However, I do not beleive that I do have M S unless the treatments I get for C I D P also work on M S . I don’t know any more than that, wish I did . I will keep following this thread. Thanks
      Mary Ann

    • Anonymous
      August 15, 2006 at 10:49 pm


      Is it only the periferal nerve paths that use the mylen sheath for conduction, or the whole central system too? As I understood, the cental nevous system doesn’t have a mylen sheath. MS starts in the cental and works it way outwards, taking the periferial sheath with it, does it not? Why we take the hit up front, and MS takes it away slowly. I’m asking now.

    • Anonymous
      August 16, 2006 at 5:21 am

      Greeetings, all.

      Mary Ann, I also have brain lesions, and my neuro has been on the watch for MS, but so far there hasn’t been anything else to indicate that the symptoms I have are anything other than CIDP, which was diagnosed because of EMG results, elevated protein in the spinal fluid, and IVIg that worked. (A few of us with CIDP have lesions; whether there’s a correlation has yet to be determined.) As the mult-sclerosis Web site says, along with neurological symptoms ‘In order to diagnose MS, there must be at least two episodes separated by at least one month and the location of the lesions must be in a least two distinct sites in the central nervous system’.

      Racer, that same Web site says, ‘Demyelination is the major underlying factor responsible for the symptoms of multiple sclerosis (MS). Demyelination is the destructive removal of myelin, an insulating and protective fatty protein which sheaths nerve cells (neurons). More specifically, the myelin is wrapped around the long extensions of neurons called axons. During MS relapses, patches of white matter in the central nervous system that normally contain tracts of myelinated neurons become inflamed and lose their myelin. These patches of demyelination are known as lesions.’ The difference between MS and CIDP is that MS demyelinates the central nerves, and CIDP the peripheral nerves. Doctors tend to believe that there’s no overlap unless you have both disorders.

      Keep fighting.


    • Anonymous
      August 16, 2006 at 11:09 am

      My penny’s worth. Protein in the CSF is due to leakage of albumen from blood vessels.

      As to the anatomy of the nervous system, the brain and spinal cord are the central nervous system (CNS). Grey matter in the cerebral cortex is linked by synapses (electro-chemical switches) to the pathways in the spinal cord.

      The sensory pathways are linked by synapses at posterior horn cells ( a pair at each vertebral level) to the sensory fibres of the peripheral nerve which branches into many branches each receiving sensory input from a specific area (dermatome) of the body.

      The anterior horn cells have synapses from motor CNS pathways to the fibres of the peripheral nerves that control muscle movement.

      Added to this, there are links at the spinal cord level between sensory and motor fibres. Hence the automatic withdrawal of a limb from noxious stimuli such as heat or pain, and of course the tendon reflexes where sensory stretch receptors in the muscle synapse with the motor fibres making the muscle move. There is also cross-over linkage so some notice response of the left leg to percussion on the right. DocDavid

    • Anonymous
      August 16, 2006 at 11:23 am

      On other matters, Racer my old friend; Deb is right, the pathways of the spinal cord are myelinated. Sigrid, unfortunately that is not strictly true, some with CIDP do in fact have plaques in brain and/or spinal cord tissue. The significance is unknown and their development is unrelated to either the symptoms nor the severity of the CIDP. But I suspect may be one of the causes of confusion over the diagnosis of MS versus CIDP. DocDavid.

    • Anonymous
      August 16, 2006 at 1:39 pm

      Thanks so much DavidBod as i finally have my answer to what is the elevated protein in the fliud. And thanks to all others also in pointing out the differences of these diseases. Ericc

    • Anonymous
      August 17, 2006 at 9:47 pm

      My 1 pence question to Dr. Dave. πŸ™‚
      The anterior horn cells have synapses from motor CNS pathways to the fibres of the peripheral nerves. (a cut and paste from your post)
      From what I understand the anterior horn cells are part of the CNS.
      My question: In what material is the CNS housed?
      It must be a thin enough membrane for the chemical information transfer to happen but strong enough to have no osmosis to happen.

      Thanks for your answer, and I’m so glad your back!


    • Anonymous
      August 18, 2006 at 6:17 am

      KC1. If you look at a cross section of spinal cord there are a pair of knobs at the back and a pair at the front; these are the posterior and anterior horn cells containing the synapses. The CNS is enclosed in a very thin membrane called the pia mater and a slightly thicker one called the arachnoid mater. A severe head injury for example produces a sub-arachnoid haemorrhage. The membranes have a good blood supply. DocDavid

    • Anonymous
      August 18, 2006 at 10:20 am

      eightplusfive, and all
      Thanks so much for your input. My neuro’s nursepractioner is a specialist in M S , and wants me off the meds I’m on so she can treat me for M S . It has become a hassle, but I keep holding my own. I have no M S symptoms and am not about to give up the C I D P treatment to be treated for M S. Fortunately, the neuro is not forcing me to do it. I just needed to hear at least one other person in my same situation.
      Thanks Doc. David for your input.
      Mary Ann

    • Anonymous
      August 20, 2006 at 12:13 am

      I have a sister in law who has MS. Outwardly our symptoms are similar, but, as you have read, on the inside of our bodies the damage is done to us in an entirely different manner.

      Sometimes I will use MS as a comparative disease when I explain my situation to a friend who doesn’t understand anything at all. But I caution them that the attack process is slightly different.

      It is hard enough for us to understand what happens to us, explaining it to our friends and family is sometimes more difficult.

      Dick S

    • Anonymous
      May 10, 2009 at 11:14 pm

      About having an MS or/and CIDP dx , does anybody knows if is necessary to have gadolinum
      contrast when one has the brain and spinal cord done?
      I had not. I had it put when they did the sacroiliac MRI to found the cartilague sclerosis.

    • Anonymous
      May 11, 2009 at 1:07 am

      Hi PJ,
      I have MS and my husband has CIDP. When I was diagnosed 25 years ago, I was diagnosed with MRI’s without gadolinum. Later when I went into drug trials for Rebif I did have periodic MRI’s with gadolinum. So I would conclude it is not necessary to use gadolinum to detect the plaques in the brain.

    • Anonymous
      May 11, 2009 at 9:04 pm

      Hey Everyone πŸ™‚

      Like a couple other people I have had several doctors over the years that think I had MS and not CIDP . However one one the times I went into the hospital they did an MRI and found lesions on my spine and it ended up being Transverse Myelitis . I didn’t have any on my brain which if I remember right is another symptom of MS . Maybe something else to look into ….. Hope it helps πŸ™‚

      Hope everyone is having a great Monday πŸ™‚


    • Anonymous
      May 16, 2009 at 7:39 pm

      Hi guys,
      Just curious, when I had the MRI on my brain the doctor told me that I had three white lesions but he said it wasn’t MS. So why would I have white lesions if not MS. are there other ways to test for MS or just that. I didn’t have lesions on my spinal cord. Hopefully those lesions were just something else.


    • Anonymous
      May 16, 2009 at 8:57 pm

      MS can have brain lessions, and maybe or not CIDP have.
      But both diseases have diferent “signatures” in CSF (spinal tap) and Serum (blood test).
      Here there is a paper from my neuro about it;

    • Anonymous
      May 16, 2009 at 11:40 pm

      Several diseases can cause those White Matter Lesions! MS Lesions normally are in a certain area on the brain or brain stem. They are usually more easy to detect and it does show up in the Spinal Tap certain proteins in the Spinal Fluid. Certain symptoms of MS too are very easy diagnostic tools. MS today is much easier to diagnose than it was years ago. Every now and then a patient comes along that makes the diagnoses hard. They thought I had MS at first but then ruled that out. Lupus or any Collegen Vascular Disease can cause lesions on the brain too. So can Amyloidosis. When there are several lesions it is a symptom that a disease is in process. So they label you as having White Matter Disease. But it is a symptom more than anything else telling the doctor you do have something auto immune going on. Hope this helps!
      Linda H

    • Anonymous
      May 18, 2010 at 1:48 pm

      I have been diagnosed with Fibro, CFS, CPS, depression, Sleep Apnea, Restless leg syndrome, blood clotting probably due to a genetic flaw and many more things.
      I have a good many brain lesions as I have been told I had them so I studied hundreds of normal and abnormal MRI’s and compared them to my copies on CD. I try but I am not good at reading films except to see the damage to my Optic Nerve. It ain’t brain surgery.. I had optic neuritis more than once and lost visual acuity in my left eye in 2006. Before that I worked yrs where it wasn’t too bad, but then 15 years with leg pain first in one leg then in the other and sometimes both and all over. I had always been clumbsy and had odd things happening like shivers down my spine, vibrations in my legs, months of bursitis and tendonitis coming and going all at once after making my life miserable. I had tremors in my head,and my hands. I had the feeling water was running down my leg or a bug was crawing up it, with compression stockings on. I also make blood clots including DVT. I have been sent to many Neurologist. 3 EMG’s showed peripheral nerve damage, sensory and motor, and MRI’s showed demeylination and lesions, gliosis, and Optic Neuritis,in my brain. I was diagnosed for year with “small axon polyneuropathies”, Peripheral Neuropathy, and was told I would never go blind or lame. My spinal cord fights to give up it’s fluides and both were abnormal with high proteins. I have had dysarthia, dysphagia, vertigo, falling over, down and upon people, joint failure, and nystagmus, episodes of coughing, very loud hickups and all kinds of muscle spasms, myokymia, clonus, and paresthesias/or the very painful ones, all over my body. I have had respiratory distress with no loss of oxygen levels according to those finger things, but it sure felt like it. I have had the hug so bad I had to hang over a bed to breathe. My worst problem is the longest problem in my right hip area and left legally blind eye that has been for 4yrs. The last test I gave in to was a Tourtellotte spinal test abnormal with overall high proteins but very high Albumin and also low blood serum. Recently I saw what I always swear is the last Neuro when he tells me he is just sure my autoimmune disease is C.I.P.D. but I left him my 2006 MRI’s that the Cleveland Clinic said were compatible with MS in 2006 when I lost my vision and got serious about it. So I have peripheral nerve damage with lesions on the brain that look like MS, and two abnormal VEP’s and 2 abnormal Spinals and 3 abnormal EMG’s and I will have another Fri. The insurance has seen all this a bazillion other things and now they are balking at IVIG treatment (by the way both C.I.D.P. and MS afflictions are treated with IVIG). I want to get better so I have to have another EMG. I don’t mind them. But no more spinals because they were both done by professionals and they had to use many needles and that did not hurt so much as their pushing against my spine trying to make it swell up. I am just so tired of everything and waiting.

    • Anonymous
      May 18, 2010 at 3:04 pm

      To K.C.’s MOM (take like a grain of salt, as I am not a medical professional)

      If your treatment is IVIG, it is also given to MS patients by their doctors too, so if that is your treatment, you are essentially being treated for both maybe especially you sound like the nature of your MS is relatively benign. Not many doctors will treat MS without a good bit of burden of disease. It could be benign and the treatments not so good and very expensive. IVIG is not a cure. I know of a woman who had no burden of disease until she was treated with a CRAB drug.

      I have found this in several articles that both diseases are treated with it. but because there isn’t as much info on C.I.D.P. as there is on MS, I found it under the IVIG search on it’s treatment. MS is more common and still I bet there are many out there especially in this state that are not diagnosed with anything but “a little peripheral Neuropathy.” I guess a little peripheral neuropathy gave me a whole lot of disability with my brain. I have terrible cognitive dysfunction which is another thing that is supposed to be unusual along with lesions in the brain, for C.I.D.P.

      We have a cluster in the area around where I live, of not that big a number, but big enough to be alarming since it is a small cluster but considering the small pop. it stands out. we are in very small rural areas close by each other. Yet on the map of state cases, we would have to have a high percentage of affected, because the state number is so low. I believe it is under diagnosed and under treated. Everybody, even the medical staff, will tell you it is true here that the state ins. co puts pressure on the doctors not to diagnose it or treat it..

    • Anonymous
      May 18, 2010 at 3:12 pm

      Very impressed. Thanks for sharing!

    • Anonymous
      May 18, 2010 at 11:13 pm

      Just a thought ….. I have had CIDP for 9 years and during one of my relapses they discovered ( with a spinal MRI ) that it was not my CIDP but Transverse Mylitis . They thought it was MS at first as well . So now when I have relaspses they have to check and see if its CIDP or Transverse Mylitis. Although they mimic each other they have different treatments.
      Hope you find your answers πŸ™‚


    • Anonymous
      May 20, 2010 at 2:36 pm

      I believe the diagnostic criteria for MS is at least two different lesions, two different times, two different places. its all about what parameters the doctors want to draw around your disease. I have had acute transverse myelitis but if I end up with a brain lesion in the future poof all of a sudden I have MS and the fact that I had AMAN or an ANA titer of 1:1260 will no longer matter. but since we have caught an SSB titer in the act I automatically fall into an MS differential of sjogrens syndrome even though one week later those antibodies neutralized. its all about what you catch in the act.
      now with the AMAN and the TM I was ANA negative or at least it was not caught in the act during testing. my presentation is identical to MS.
      also My TM scar is no longer detectable in newer MRIs so these sometimes heal very perfectly.
      contrast just says whether or not it is the current cause of your symptoms or if it is older. there is no reason why any doctor should down play a demylinating lesion.

    • Anonymous
      May 20, 2010 at 6:38 pm

      To me, the key analogy between MS and CIDP is that nasty word ‘DEMEYELINATION’. Yet for us it occurs in different ways, my understanding of the ‘chemistry’ of it all tho, seems to indicate that the triggers are similar.
      As for Brain Scans and MRI’s? OFTEN, we show ‘white spots’ that could be indicative of one or the other? But are merely scars. Scars from concussions or whatever other damages we can and do DO to our bodies. I didn’t reallly appreciate all this but for a later brain MRI…I was questioned closely about ‘falls’? And thus was able to recall falls from ten, twenty and more years before that could and do show up on those scans. It’s up to the radiologists to sort out falls scarring from plaques, and I believe they are distinct?
      I also thank all the work MS folks have done regarding brain and say…anathesiology? That work has helped prevent ME from added, long term side effects due to many surgeries for other issues!
      To see any research about the ‘D’ word excites me, especially IF it’s showing promise beyond the basic research mouse!
      More good things are coming down the pike, and, I suspect we mite have an avalance soon, but not ‘necessarily exclusive’ to US? I don’t care about that, progress IS progress!

    • Anonymous
      May 21, 2010 at 3:13 pm

      the new neuro told me today. I have C.I.D.P. and I also have M.S. and he added there have been some small strokes. He doesn’t care what it is labeled, and I made him tell me twice that I had MS because I did not want my husband saying I mis heard him. He said the second time he saw the “Dawson’s Fingers” and he knows I have MS. He just wants to get it approved and to treat me. He doesn’t waste time, he did the only EMG study that ever hurt. I said either you are very good, or you know where to put the needles because this is the first time this test hurt. He said I don’t have Neuropathy, I have C.I.D.P. and I have MS. He wants not to mess around because he said the doctors in my state are known for not treating and the ins is hard to work for so we had to repeat this important test so that I can get the approval for the treatment under the C.I.P.D. so he asked me again do I want IVIG? I said Yes! the only thing that was shocking to me was he told me I had also had small strokes in my brain, but they were very small and he said let’s treat this and hopefully get you feeling better. I said sounds good to me! I have had 10 or more Neurologist and before he looked at my records and my MRI’s he was my 5th Possible MS. So now, I don’t have to feel ashamed anymore at my infirmaries, I finally have a diagnosis after 20 years of seeing doctors for this disease, I think I have had for at least 30 years.


    • Anonymous
      May 21, 2010 at 8:10 pm

      My heart and soul are with you? It’s bad enuf to get even ONE diagnosis? But two??? They are treated differently tho, I believe, and do give the IVIG a try to see if it helps one part of the ‘problem’. Golly I almost wish that your husband had been there? But at the same time, maybe not. You have to take time to process this all, and then find the best sources to give him [doc included] to help HIM asorb it all.
      At least, on the good side? You weren’t ‘imagining it all’!!!! Be sure to ask this doctor for some diagnosis in writing? Just so you have it in hand for the future. Paper CAN be important at times. Or, useful at others.
      Keep faith in yourself, and learn as much as you can and then? Start tilting at the windmills! Keep dreaming and hoping. For me those two things give me the patience I need to get on. I hope it helps you too!