Update – Preliminary Diagnosis = CIDP

Dave,

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 …

Quote:
[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.

Quote:

[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]
[B][I]…………………[/I][/B]
[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]
[LIST=1]
[*][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]
[/quote]

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 ….

dave,

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

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..

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.

Dave,

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.

Suzanne

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]

DaveB,

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,

Suzanne

Dave,

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!!!