Quote:
Originally Posted by aliena
I have had this condition for 10 years, I am happy to answer questions as best I can. There is little known about the condition you are correct, but I can at least share my experience and what I have learned. Let me know.
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Wow! After waiting many months, finally someone answered my thread. I was beginning to wonder if I was the only one out there with this condition. I'm interested in learning more about this condition, to find out the best way to treat it, and what are reasonable expectations regarding the outcome of the treatment.
I've started taking IVIg, and have had two sets of infusions. A month after the third infusion, I'll have a set of neurological tests to determineif I am responding. Right now, it is too soon to say anything about the results of the IVIg; I understand it takes many months for nerves to heal.
What parts of your body are affected MAMA?
Have you tried any treatments? If so, what was successful?
And what has been your experience about progression if left untreated?