Reply To: questions from recently diagnosed CIDP

Jane12,

I believe it is possible to have a very mild CIDP for years before a major episode of symptoms. For at least 8 years before my major episode, I had trouble getting up from a crouched position. I thought at the time that it was just age, fat, and deconditioning. It may have been partly that, but I now think it was a low-level CIDP. My major episode was not as bad as many that you will read about here, but without treatment, it would have been much worse.

As to treatment, as I said in another post, IVIg is the standard treatment, so your insurance company should cover it. However, any treatment that works is better than none at all. If you are in fact stable, you might be able to wait a bit. Make sure you are not getting worse, though. Keep a diary of symptoms and review it every few days. If you find things are worse this week than last and have not resolved the problem with insurance coverage for IVIg, I would recommend starting prednisone. Yes, the side effects can be severe. However, by not arresting the inflammation and demyelination, you leave your nerves more susceptible to damage to the axons.

As for stress, people react to it very differently. Many people here have seen a correlation, sometime a very strong one, with stress and severity of symptoms. My major episode was unrelated to stress. Once I was treated, I had very rapid improvement, returning to acceptable, if not full, function within days.

I was not physically active before my major episode, so I don’t have the benchmark you have. I was left with some weakness, such that it is awkward for me to get down to the floor or up from it. I have some minor pains and other deficits. But that is OK, because I can do nearly everything I want to do. I am content to be where I am now.

Godspeed in finding your treatment soon,
MarkEns