Reply To: Second Nerve Conduction Study, What to do?

July 22, 2012 at 1:25 am

JGL,

Ignore my previous question, I have my answer.
The real question is what do they mean by worse? I can think of four possibilities:
the demyelination is worse, but there is no axonal damage;
the demyelination is worse and now there is axonal damage;
the demyelination is equally severe and now there is axonal damage; and
the demyelination is improved and there is now axonal damage.
We can rule out the first one, because your results suggest axonal damage. Given your improved symptoms, it seems like you could rule out the second and third. That leaves the fourth or a bad correlation between symptom and test. While not good news, it will show the neurologist that she should be more aggressive in her treatment. If the IVIg is not burdensome, then it makes sense to try more IVIg more often and see how you respond. If you respond well, then the typical protocol would not add immunosuppressants or corticosteroids just yet.

If you do need them, you have to weigh the risks, which is something you need to talk about with your doctors (all of them), your family, and your supporters. Prednisone has several bad side effects, especially if taken over the long term (see http://noairtogo.tripod.com/prednisone.htm) . The side effects are not specific to prednisone, but are present with all of the corticosteroids, varying only in degree. Some of the immunosuppressants are known carcinogend, meaning that they can cause cancer in humans, which is not to say that they will cause cancer in every human. In my case, I decided that function now was better than long life, so I took the risks and did both. I ended up with cataracts and became pre-diabetic from the steroids. I have no regrets, though.

~MarkEns