Update – Preliminary Diagnosis = CIDP

    • Anonymous
      November 14, 2006 at 9:32 am

      Well it looks like I’ve finally found a neurologist who has heard of something besides MS. I had my first appointment with the new Doc yesterday, and after doing all of the preliminary tests (pin pricks, scratches, balance, peripheral vision, touch nose, etc.) he says it sounds like CIDP. The fact that I have virtually no reflexes seems to be a big indicator, he immediately said after checking my reflexes that it is a big clue.

      Anyway, I’m scheduled for an EMG in a couple of weeks which will hopefully confirm the diagnosis. I know “hopefully” is an odd word to use when being diagnosed with a potentially chronic disease, but after all these years I’ll be happy to at least finally know what it is.

      If it does turn out to be CIDP, I’m wondering what the treatment might be? The Doc mentioned that it is responsive to steroids, but considering my symptoms are mild and my history with this is that it generally runs its course after a few weeks and goes into remission on its own, does anybody have any ideas on whether it would be worthwile to wait a bit and see if it follows its familiar pattern or should I start treatment right away?

      Also, does anybody know what the general prognosis for this disease is? Does it generally get progressively worse, or is just different for each individual person?


    • Anonymous
      November 14, 2006 at 9:56 am


      Im affraid Im taking the lazy way out and cutting and pasting from a previous post you have probably seen by now. Regardless, it does help to explain just a little…..

      [quote] Norb explained things so well back in July, he said the following …

      [I]…….but I never understood why in GBS often symptoms would hang on for months or even years and it still would not be considered chronic and not the same as CIDP. The important difference is [B]persistence [/B]in GBS but [B]progression[/B] in CIDP. In GBS the bad antibodies are gone but the damage to the nerves has been done. Symptoms caused by nerve damage continue to exist until and if nerves regrow. They are persistent. In CIDP the bad antibodies don’t go away and continue to do damage finding new areas to attack. Symptoms continue to worsen. They are progressive. For some they remit only to come back.[/I]

      The following is taken from the UK gbs/cidp webside – I only copied portions of it.


      [I]Illnesses can be short ([B]acute[/B]) or long-lasting ([B]chronic[/B]). In dysimmune neuropathies, acute is defined when the [B]nadir[/B] (worse point) is comes within 28 days. Chronic is defined when the nadir is comes after 56 days. Unusually, if the nadir comes between 28 and 56 days, the illness is termed [B]sub-acute[/B].[/I]
      [I][B]CIDP[/B] is short for chronic inflammatory demyelinating poly(radiculo)neuropathy. ‘Radiculo’ is often omitted, especially in North America. The symptoms are similar to GBS but follow a chronic course. CIDP does not refer to a description of the symptoms but describes the mechanism that causes them. [B]Inflammatory[/B] means the condition is caused by inflamation or irritation. [B]Demyelinating poly(radiculo)neuropathy [/B]means that the inflammation demyelinates many neurons (and their roots).[/I]
      [I]This spectrum of peripheral neuropathy is very wide and multidirectional:[/I]
      [*][I]The illness may be acute or chronic[/I]
      [*][I]The illness may be demyelinating or cause damage to the axons (or both)[/I]
      [*][I]The illness may predominately affect motor or sensory or autonomic nerves. It may affect all of them.[/I]
      [*][I]The illness may be global affecting all the body or just part of it[/I][/LIST]

      I dont have CIDP, but did have GBS, and I know there are forum members who can answer your question a little better than I can even attempt to do ….

    • Anonymous
      November 14, 2006 at 10:17 am


      do not accept steroids until ivig has proven ineffective which it prolly will not. steroids have too many v bad effects. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 14, 2006 at 1:50 pm

      I did not take steroids there were too many side effects and I am already too fat!!! and we did the route of no doing anything becase it was mild and thought that it would go away or get better on its own. nope it just got worse again. so we did the ivig again i had actually forgotten what it was like to not have pain in my legs and spasms. for about two weeks these symptoms were almost totally gone or easaliy ignored. i am going to continue with the ivig again. good luck and be proactive. its your body and you know your body..

    • Anonymous
      November 14, 2006 at 2:32 pm

      I am in the position you were. I need a doc that nows more about GBS. I am tired of hearing “That doesn’t happen with GBS!” when I went through it and now differently. I plan on posting tonight my situation to see if any of you have had similiar symptoms.

    • Anonymous
      November 14, 2006 at 2:46 pm

      Thanks for the replies, I am definitely going to counter with IVIG if my Doc suggests steroids.


      Whatever you do, DO NOT let your doctors off the hook. I’ve had this condition for 17 years undiagnosed because the Neurologist my PcP initially sent me to was not interested in persuing a diagnosis beyond “You don’t have MS”. Fortunately my relapses have been short, infrequent, and minor to this point, but this time I just got fet up and went to a different Neuro. Please do post your whole story, I think you’ll find the responses very helpful and informative as I did.

    • Anonymous
      November 14, 2006 at 3:34 pm


      Glad to hear you are persuing answers. Also worth noting, there is a form of GBS called relapsing/remitting that is different from CIDP. CIDP leaves the patient with ever-worse condition after each attack, whereas with relapsing/remitting GBS, the patient usually returns to approx. the same condition after recovering from the attacks.

      Best wishes on finding answers.


    • Anonymous
      November 15, 2006 at 11:29 am

      Hmm, thats interesting Suzanne. My first instance left me with some slight residual weakness in the knees, but all of the reccurances since have been rather mild and left no residual problems. I’ll mention it to the Doc when I go for my EMG, thanks for the tip!

    • Anonymous
      November 15, 2006 at 2:04 pm

      Hmmmm… this is all so confusing. With the statement made of with no reflexes can lend toward diagnosing CIDP makes me wonder about myself. It seems like it is once a month and I am really down hurting bad. Then a few days rest I perk up some. I don’t think I used to be this bad years ago. I suppose it really doesn’t make much difference – unless the IVIG would really help me. The only people it would really affect would be work, I suppose. Then they would have a name for the way I am.

      I just saw my pcp this week and told him of me being down about once a month and he just seemed to look with a blank, but caring look at me. My insurance sucks now and I don’t have many choices for a neuro. Would definitely have to go to a new one and with high co-pays and deductibles… well, crap, I guess you all will have to keep listening to me complain for now. And I am so grateful of that – you, my second family, are the best!!!!!!

      Good luck Dave!

      [I]Edit: I went about 3 years ago to neuro and had emg/ncv done with results showing damage. ????[/I]

    • Anonymous
      November 15, 2006 at 5:47 pm


      Please let us know what you find out. If nothing else, you may get your doctor doing some research!

      Take a look at the definitions of the many, many groups and subgroups of GBS and CIDP on the UK version of this website. This helps to sort them out.

      However, all of these catergories can, and often do, have overlaps. Bear in mind that these are man-made groupings of symptoms etc., to help the doctors hone in on the one you have.

      Best wishes,


    • Anonymous
      November 16, 2006 at 11:11 am


      I think confusing is probably the best description I have heard of this whole thing. In my own case, I think the only thing I can say with relative certainty is that I have a history of having had one somewhat debilating case of some sort of a perepheral neuropathy, and several subsequent minor, non-debilating reoccurances. I believe what I am experiencing now is another such reccurance, but whether its CIDP, GBS, something else, or some combination of afflications I have no idea. I’m not really sure the Docs ever know for sure either, and to be honest I’m not even sure we are even talking about distinctly different diseases or different manifestations of the same root disease (or syndrome, or whatever they want to call it). Confusing? Yes indeed.

    • Anonymous
      November 16, 2006 at 2:45 pm


      Thank you for clarifying that this is all confusing. I suppose the main thing we know is when we hurt and just want it to stop.

      I’ve got myself talked into going to be earlier, especially now that it gets dark early, so last night I was in bed at 7pm. What a boring life… At least I have a new comfy bed 🙂

      Good luck to you and if you find a miracle – let us know!!!