Back from the doctor. Feeling confused. My husband and I went back to his neurologist we had seen for several years but not in the last year. He said:
(not in this particular order)

regarding the test results and the findings of the new nuro
1. not enough blood work had been done to decide if it is CIDP

2. he was not going to request a lumbar puncture

3. was not happy that my husband's feet were not warmed prior to the nerve conduction test. - gives a more accurate reading.

4. Even if my husband did have CIDP he would never reccommend IVIG at this stage. He said, yes he has painful neuropathy, that he would like to relieve with medications, and he want him to start on cymbaltan.

5. He said my husband's legs are very, very, strong, except that his left foot is about 20% weak. If that causes him to trip, that we can try a brace or some type of support (forgot his exact words)

6. He said that when he prescribes IVIG, he only does it (for instance when some one's legs are so weak that they can't walk)

7. He said IVIG is a very serious medication that he would not prescibe for my husband's situation.

8. He said that it has serious risks and he is aware of two people that had renal failure and died.

9. He said that I should be aware that when a doctor prescribes IVIG they recieive between $1000 to $1500 depending upon the manufacturer, from the manufacturer for each and every infusion.

10. When I mentioned that if it didn't help the CIDP that it just might help Alzheimer's. After looking at the paper work I supplied about the trial, he said: Phase II of this trial showed improvement which consisted of 16 people, Phase III consists of several hundred people and until those results come out showing that hundreds of people showed cognitive improvement he would never recommend it for Alzheimers's. I told him by the time the trial completed and the FDA approves it for Alzheimer's it could be too late for my husband to benefit from it.

11. He said he hopes that is not the case, but he still does not recommend IVIG for my husband. He kept saying that it's not an aspirin, and it carries risks.

So we left with a prescription for Cymbalta and an order to have some additional blood work done. I know this doctor is on the conservative side, and is on the neurology board at a world renowned hospital and teaches there one day a week at the university's medical school. So now I have two opposing opinions, one neuro saying very little risk the possible benefits totally out weight the very small risk, and the other neuro saying don't do it. I am so emotionally exhausted from this whole situation. I really can't think clearly at the moment, so I'm not going to think about it tonight. I am wondering if you know anything about cymbalta? I looked it up and it seems to an anti depressant? I wonder if it is similar to effexor, because my husband took that last year and after the fifth day he had to stop because it really, really confused him and totally affected his memory terribly. I probably should post this question about cymbalta on the nuropathy board to get feedback. Anyway thanks for listening and by the way at what stage were you prescribed IVIG, when you had neropathy pain only or when you had much muscle weakness too? thanks for your response.