CIDP Can I get back to 100%
AnonymousNovember 12, 2006 at 7:45 pm
I wish I could tell that’s true. In my case it is not.:rolleyes: Even with treatment I’m slowing going down hill. Most of the other posting appear to indicate the you can get better to some degree.:) I’m new to the sight. However, I would suggest you look through the back posting and see what others have to say. I hope you are able to recover 100%:)
AnonymousNovember 12, 2006 at 8:02 pm
Norb explained things so well back in July, he said the following …
[QUOTE]…….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.
The following is taken from the UK gbs/cidp webside – I only copied portions of it.
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].
[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).
This spectrum of peripheral neuropathy is very wide and multidirectional:
[*]The illness may be acute or chronic
[*]The illness may be demyelinating or cause damage to the axons (or both)
[*]The illness may predominately affect motor or sensory or autonomic nerves. It may affect all of them.
[*]The illness may be global affecting all the body or just part of it[/LIST]
AnonymousNovember 13, 2006 at 2:33 pm
I’ve heard of the rare CIDPer for whom the disorder burned itself out, but in six years never one that had diagnosis and a single course of treatment, and never had any other problems. Not saying that it couldn’t happen–CIDP has a tendency to affect each of us differently–but I haven’t heard of one. (Here’s hoping someone tells me I’m wrong!)
There are those for whom treatment works so well that they are essentially normal between treatments, and some who only have to have treatment sporadically. I always tell people to give it a year before settling on how the disorder is going to affect them long term, and then also realize that the course can change over time, either for the better or the worse.
Makes CIDP a real challenge!
AnonymousNovember 19, 2006 at 9:19 pm
Your question is hard for any of us to answer. This disease is highly individual. Symptoms vary widley in severity, duration, and in their response to treatment.
Having been on this forum for over three years, I can say that it is the rare/non-existent individual that “never has to deal with it again”. The meds that are available can help bring varying degrees of normalcy to some of us.
I refer to the words of one of the most published doctors in the CIDP field when I saw him early in my dx. He told me:
1) “You wont die from it.”
2) “You most likely will not end up in a wheelchair.” (I know that some do).
3) “Get used to it. You’ll have it for the rest of your life. 90% who get it do.”
I told him “I’m counting on 10%”.
AnonymousNovember 21, 2006 at 7:28 am
This is what drives me CRAZY about CIDP. I am on IVIG every three weeks. Along with this, I am on CellCept to hopefully spread the IVIG out to every five weeks- then seven- then???
However, what drives me crazy is, I have the question in my mind, “If I get off of this medicine totally, will I get worse- or maybe, I’m in the 10%. Maybe I don’t have CIDP at all- just GBS with nerve damage.”
Part of me wants to quit the meds totally to see what would happen. But, I don’t want to go back to my non-walking state.
Sorry I didn’t provide any answers- does anybody have them?
Just know, Roncam, that I have the same question as you. I think we all wonder about this!
AnonymousNovember 26, 2006 at 9:52 pm
Of what I have been told by my doctors, don’t push yourself. Know your body. Exercise enough, but not too much- not too little.
There doesn’t seem to be a science to it. Just experiment. I know when I’ve done too much- I am pooped, more numb, and weaker.
Hang in there!
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