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Originally Posted by Fran E
Hi, welcome and sorry to hear about your diagnosis. I have idiopathic peripheral polyneuropathy - sensory with demyelination and some axonal. They think it's autoimmune but don't know for sure. I was diagnosed about a year and a half ago, and have been having IVIG for about a year now. I go once a month for 2 days back to back. I used to get 50 grams over two days, now I get 100 grams over two days. It takes about 6 hours a day. I sit an armchair while the product drips by IV. IT is not painful or uncomfortable unless you don't like needles ![Icon Wink](images/smiliesb/icon_wink.gif) but is is time consuming. The main side effect you can get is head aches, I've had a mild one but it goes away with tylenol. I also feel flushed and hot afterwards for a few hours. But I go straight back to work as soon as it's done, no need to go home or lie down or anything. there is a small risk of blood clots and of course a risk when you receive any blood product of contamination, but the risk is low. does it help? I feel a little better afterwards, but the nerve conduction tests continue to show a decline, making it questionable whether it does help (hence we have now doubled the dose to see if it does help....). The other option for me was prednisone which I really really don't want to do.... so I continue to cross my fingers and hope this works because, besides for the time it takes, it really is not so bad. Whenever I go to the hospital for a treatment there are a number of others gettting IVIG - new folks and "regulars' like me. some have been on for years. It is very expensive (they say $75 a gram) so the decision to provide it is not made lightly. Hope this info helps. Good luck.
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Fran - can I ask a question please? How did you get a diagnosis of "idiopathic peripheral polyneuropathy - sensory with demyelination and some axonal." My neuro said "it does appear that you have small fiber polyneuropathy of unknown origin." And, "let's wait and see so come back in 3 months." It just seems that more tests need to be done to determine exactly what type of neuropathy I have...