CIDP and CNS

    • Anonymous
      October 1, 2008 at 5:17 am

      Here are a few articles I ran across Googling this topic:

      [url]http://neuromuscular.wustl.edu/antibody/pnimdem.html[/url]

      and if you scroll down on the same page there is this

      [url]http://neuromuscular.wustl.edu/antibody/pnimdem.html#cidpcns[/url]

      and this one is kinda scary

      [url]http://www.cnaa.acad.md/en/thesis/5159/[/url]

      and another reference

      [url]http://www3.interscience.wiley.com/journal/118849445/abstract[/url]

      and finally

      [url]http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1014259[/url]

      here is the abstract of that one

      [QUOTE]In a consecutive series of 30 patients with chronic inflammatory demyelinating polyneuropathy (CIDP) minor clinical evidence of CNS involvement was found in five. Cranial magnetic resonance imaging (MRI) was performed in 28 and revealed abnormalities consistent with demyelination in nine patients aged less than 50 years and abnormalities in five aged 50 years or over. Measurements of central motor conduction time (CMCT) were obtained in 18 and showed unilateral or bilateral abnormalities in six. [B]It is concluded that subclinical evidence of central nervous system (CNS) involvement is common, at least in patients with CIDP in the United Kingdom, but that clinically evident signs of CNS disease are infrequent.[/B] The association of a multiple sclerosis-like syndrome with CIDP is rare.[/QUOTE]

      There are more, a search on Google for “CIDP CNS” resulted in 11,300 hits… 😮

    • Anonymous
      October 1, 2008 at 5:41 am

      Concerning CIDP and CNS I wonder if the MRI we all had was properly done. Mine cranial MRI was with no gadolinium, the same in the spinal MRI. I had the gadolinium put after a second trial in the sacroiliac MRI where I have had pain for years, so then it was found the sacroiliac sclerosis. Should I had the gadolinium in the cranial MRI. Up to day I had no explanation from the docs on how I was blind in both eyes for 20 minutes after a fall down last year.

    • Anonymous
      October 1, 2008 at 7:23 am

      I’ve had two MRIs of my brain both with and without contrast – both showed small lesions that three different neurologists said were nothing to worry about. I do not know if they are still there or not as I haven’t had another brain MRI in the last two years. Frankly I got imaged so much I was starting to worry I’d get cancer from all the radioactive contrast. 😮

    • Anonymous
      October 1, 2008 at 7:46 am

      I had one MRI without contrast. Found 3 small spots between the white and grey matter. Neurologist recently said they were nothing to worry about.

      I don’t have a dx of CIDP just the generalized dx of sensory motor polyneuropathy. My sx are very much like MS symptoms.

      Julie – interesting read in your quote where it states the MS like sx are rare with CIDP. I have had tongue fasciculations. I did a search on that with CIDP and found that to be a rare sx of CIDP as well. I think they quoted 8%Hoping I get some answers in November when I see the PN specialist. Thanks for the great links.

      Kelly

    • Anonymous
      October 1, 2008 at 7:43 pm

      Hi there Julie

      Thanks so much for posting the article links! Your research skills are always most welcome! I too had a few “spots” on my brain MRI’s.

      Kazza 🙂

    • Anonymous
      October 2, 2008 at 1:00 pm

      Thank you Julie for posting the links. It looks like I did not do enough research in the past because I’ve always been saying there is usually no CNS involvement. Well, the references call its subclinical. What is scary is what the Washington University in St. Louis web site says about my variant, anti-MAG IgM neuropathy: “CNS more abundant than PNS “. I never heard that before. I guess I’ve been lucky until now because I am not aware of any CNS involvement. The question I have now is whether it is possible to develop down the line.

    • Anonymous
      February 22, 2009 at 3:27 am

      I had to go looking for this because a search of the two words must be too common–so I brought back up. WithHope

    • Anonymous
      February 22, 2009 at 10:23 am

      Hi, Folks!

      I’ve stayed away from the Forum because it seems just rough? Does ANYONE else feel as if the Doctors have just stuck “Us” w some diagnosis they ca’t efectivelytreat, use itto run up a huge bill then just cast “Us” aside?!

      I’m sorry- if anyone has an idea ofhow to get apropr Prognosis from a Practitioner, let me know. I’m a single parent living out in the country in a big old farmhouse w steps everywhere and a 3 acre yard, the treatments (Cell-Cept, Prendisone (IvIg had no effect) And where I’m stil walking, driving, etc- I AM deteriorating, slowly and te prendisone has made my bones brittle, old breaks going unstable. (Enough complaining) Ijustwould liketo kow how one gets a straight answerfrom these Docs? Do they tell me’m “doing Great” because I “should/could” be so much worse, orarethey trying to keep mehopeful? Oris this just some scm to milk the Ins Company?

      I’m. actually dead serious and would lieyour uput. I can deal w bad news, but NO news doesn’t “get it?”

      Meanwhile, thanksfor observing my Rant- God e with You All- keep up thefight!

      Eric

    • Anonymous
      February 22, 2009 at 11:09 am

      Thanks Julie for the links

      After reading Norb’s reply, I googled “IgM MGUS CNS” and located an additional paper at [url]http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=488972&blobtype=pdf[/url] titled “Frequency of central lesions in polyneuropathy associated with IgM monoclonal gammopathy: an MRI, neurophysiological and immunochemical study” dated 1992. That’s a long time ago, but it confirms CNS involvement in some cases of IgM MGUS.

      It also references three papers (first three) from the same era on the topic of CNS involvement in CIDP.

      I personally have not had an MRI.

      I’ll add this subject to my list of questions to ask at the upcoming GBS/CIDP conference in Toronto on April 18th.

      Andrew

    • Anonymous
      February 23, 2009 at 9:24 pm

      [SIZE=”4″]It was my understanding that if lessions were present, it was MS. I don’t have any, thankfully, I’ve got enough work with me.;) [/SIZE]

    • Anonymous
      February 24, 2009 at 3:28 am

      Not necessarily Mike. They are now saying you can have lesions for different reasons – even heavy migraine sufferers can have lesions in their brain without it being MS. Oh joy. When the docs saw mine they said the lesions weren’t anything to worry about but not MS.

      The brain is a fascinating thing isn’t it? 🙂

    • Anonymous
      February 24, 2009 at 3:52 am

      [QUOTE=Eric the Bearman]Hi, Folks!

      I’ve stayed away from the Forum because it seems just rough? Does ANYONE else feel as if the Doctors have just stuck “Us” w some diagnosis they ca’t efectivelytreat, use itto run up a huge bill then just cast “Us” aside?!

      I’m sorry- if anyone has an idea ofhow to get apropr Prognosis from a Practitioner, let me know. I’m a single parent living out in the country in a big old farmhouse w steps everywhere and a 3 acre yard, the treatments (Cell-Cept, Prendisone (IvIg had no effect) And where I’m stil walking, driving, etc- I AM deteriorating, slowly and te prendisone has made my bones brittle, old breaks going unstable. (Enough complaining) Ijustwould liketo kow how one gets a straight answerfrom these Docs? Do they tell me’m “doing Great” because I “should/could” be so much worse, orarethey trying to keep mehopeful? Oris this just some scm to milk the Ins Company?

      I’m. actually dead serious and would lieyour uput. I can deal w bad news, but NO news doesn’t “get it?”

      Meanwhile, thanksfor observing my Rant- God e with You All- keep up thefight!

      Eric[/QUOTE]

      Eric,
      I understand what you are saying and I’ve actually thought a lot about it. I don’t have any answers but I think my perspective has evolved into something like:

      1) we don’t know all there is to know about the human body, it’s not an exact science because:
      2) individuals can vary a great deal in their symptoms and yet have the same disease and the same goes for their responses to treatment but:
      3) patients don’t get approved for treatment without a diagnosis (at least not for long anyway) leading doctors to come up with a diagnosis even if it has to be modified later on down the path when more information becomes available and:
      4) doctors are well aware that the patient’s attitude has a lot to do with their prognosis – well researched and studied by now – and therefore may be reluctant to “label” you with a set prognosis because it might just make you stay at that level because you believe thats as good as you will get
      5) there is not a lot of funding for or interest in CIDP research – there is some and a lot of information has come out in the last two years that wasn’t available two years ago but we don’t know as much about this disease as we do about MS. That being said I think you will find it rare that a doctor will give an MS patient a prognosis either (refer back to #2 and #4)

      As for running up the bill etc. I don’t think you run that risk at a university (are you still at Hopkins?) but you MAY run the risk at a private neurologist. I’d be SHOCKED if there were unnecessary procedures done though as that kind of thing can get your MD-butt kicked. It’s difficult to diagnose, difficult to treat and there is nothing about this disease that is cheap except for the air you breathe voluntarily. The plus side is we do have access to some of the best medical care in the world – the minus side is it comes with a price tag. If you are concerned about costs then bring up a dialogue with your doctor, ask how much things cost and if they are really needed, ask about generic drugs, side effects from various treatments and so on. They might not be able to answer all your questions about costs but they can find out and work with you. I think most doctors are more concerned about your health than about running up your bill. When faced with “I can’t see you anymore if all you have are 4:30pm appointments” my doctor gave up his lunch hour to see me at noon. (shocking isn’t it!!!) You have to ask for what you need though, people can’t read your mind.

      Take care Eric and I’m sorry this is so difficult for you.

      Julie

    • Anonymous
      February 24, 2009 at 10:06 am

      I’d like to add to what Julie has said or maybe just reiterate it in a slightly different twist. Julie has said it succinctly. I think that this disease makes it difficult to nail down a definite diagnosis in itself and then as consumers want our physicians to predict the future. I know that is my case as I go there with my questions…..Sometimes after I ask them, I will answer myself by saying, “There is no way to predict that is there?” And he will just shake his head. Frankly sometimes I get frustrated with the “I really don’t know” but now I just take this statement and run with it as then I will try to make it the best I can and beat his expectations. I tell him what my goals are and he tells me there is nothing he would like better. This disease is so frustrating with the ups and downs its hard to stay positive all the time, but the negative will positively drag you down.

    • Anonymous
      February 24, 2009 at 12:59 pm

      Eric,

      I also sometimes wish a Dr. would be more informative, you know, tell me more. There were tests, tests, and tests. I didn’t get better, you go in every three months, they say, “OK you are doing fine. See you in three months.”

      I though that was pretty crappy as well.

      Then I started writing down my questions before I went in. I had a list, and made him answer them, He did.

      Then I started writing down my problems before I went in. You know you always forget something when you get talking. He read them.

      Those two things made so much difference in my care. I got the answers I wanted, and he got a better list of my current situation before he started doing his work. It was really helpful.

      Julie is so right with what she said about funding. There are just so few of us affected, it would never be “cost effective” to research CIDP. We just have to hope that a cure is found for something close. It might apply for us as well.

    • Anonymous
      February 24, 2009 at 11:44 pm

      [QUOTE=Julie]Not necessarily Mike. They are now saying you can have lesions for different reasons – even heavy migraine sufferers can have lesions in their brain without it being MS. Oh joy. When the docs saw mine they said the lesions weren’t anything to worry about but not MS.

      The brain is a fascinating thing isn’t it? :)[/QUOTE]

      [SIZE=”4″]That’s good info Julie. Yes the brain & the body are fascinating. I was also told if the nerve can’t rebuild,& the mylin doesn’t grow, a new nerve or the old one,I can’t remember which, will regrow & take a detour around the affected area to restore the needed area. I swear the doctors know less than us. Why couldn’t we all hit the lottery? I think our chances are better.[/SIZE]