I had my neuro appt. today, and all the results from my tests were negative. I printed out 4 articles about PKD to show him. He said that he did hear of this before, but was not too familiar with it, he skimmed the articles, which I had highlighted various parts, told him about you two, and asked what he thought.
I told him how you were given Tegretol and the symptoms went away, and what did he think about that? He said that if I felt that I wanted to try the tegretol he would prescribe it for me and see how it works. I was so shocked that he asked me what I thought and if I wanted to try it he'd have no problem giving it to me. He said that it wouldn't have any effects on me if I took it and it didn't do anything and that it was worth a try. Of course I said yes, that I would try it. He gave me a low dose to start, 100mg twice a day for one week, then 3 times a day the week after.
I took the first pill tonight after dinner, and I am praying that it will work! I feel like it is worth a shot and if I don't try it I will never know. Oh, and he even told me about a neuro-specialist in these disorders, who is at Jefferson Medical Center in Philadelphia. He said it would take months to get an appt. with him on my own, but if I want to go see him, he will get me an appointment. So, I will see how this medicine works and then go from there....
Thanks for telling me your experiences regarding this and leading me in this direction. I just hope and pray that it works for me like it did for you!
Keeping my fingers crossed~
Jill
I told him how you were given Tegretol and the symptoms went away, and what did he think about that? He said that if I felt that I wanted to try the tegretol he would prescribe it for me and see how it works. I was so shocked that he asked me what I thought and if I wanted to try it he'd have no problem giving it to me. He said that it wouldn't have any effects on me if I took it and it didn't do anything and that it was worth a try. Of course I said yes, that I would try it. He gave me a low dose to start, 100mg twice a day for one week, then 3 times a day the week after.
I took the first pill tonight after dinner, and I am praying that it will work! I feel like it is worth a shot and if I don't try it I will never know. Oh, and he even told me about a neuro-specialist in these disorders, who is at Jefferson Medical Center in Philadelphia. He said it would take months to get an appt. with him on my own, but if I want to go see him, he will get me an appointment. So, I will see how this medicine works and then go from there....
Thanks for telling me your experiences regarding this and leading me in this direction. I just hope and pray that it works for me like it did for you!
Keeping my fingers crossed~
Jill
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