rambing thoughts

Pam,

First thought upon reading: it is so rare that cidp comes on this rapidly, and this severely; any idea if he shows signs of relapse, or is this a sudden attack that has shown no improvement?

The sudden onset makes me wonder if a definitive diagnosis has been made.

You mentioned his hands – I recall reading in journal articles of motor neuron disease – started in the hands and arms and progressed from there. I think I am remembering this right – can look into it in a day or two if no one can clarify. Multifocal motor neuropathy possible other differential. Throwing these ideas out there to suggest more testing is needed. It could be devastating to them to find out after 6 months treatment that he had something else, and they lost valuable time to take a different approach.

I agree with you – ivig doesn’t accumulate over a period of a year. Sometimes, it may take 2 or 3 months to begin showing any real improvement, but as we all have said many times, the nerves can begin to heal themselves when the attack is stopped by ivig.

I wanted to respond to your post mainly because my daughter did not show any improvement for over a year (cidp), and slowly I watched her get weaker with each “relapse”. She had ivig every 2 weeks for 16 months – after a few days of feeling bad from the infusion, she would regain a bit of strength (enough that she could hold a cup of water). It would only last about a week or 10 days before she would start back-sliding. The point I wanted to make in all of this is that we were able to see a response from ivig, even if only a little. From your post, it sounds like he has had no response to ivig in more than 6 months.

I haven’t helped much, but I do hope they will benefit from taking a second look at his diagnosis, and investigate other treatment options. (a plan for the worst, hope for the best strategy)

cd

Oops, one more thing – my daughter was bedbound/wheelchair for a year while I waited for ivig to do its magic. Then I began a treatment strategy that *seemed* to change her course. (a bit unorthodox, won’t go into it now) She has never relapsed again, and from all appearances, she appears normal (walks, can use hands, has balance, etc). As her mother, I can see limitations in that her nerves have not completely healed (still notice weakness in one foot for example). I still have to shake my head to make sure it’s real sometimes, and subconsciously holding my breath, but til then, I enjoy watching my daughter take control of her life again. A good recovery can happen – even after a year.