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Originally Posted by JoanB
Wow Gyrene, that sure is amazing that they actually did find the cause with it being so rare. I sure hope that this treatment works for you and that things get easier very soon! Thanks for sharing your experience with us!
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I have always believed that the "man upstairs" controls all things. I have always tried to let Him lead me. It ain't always easy, being a stubborn cajun like I am, but it is always the best way. I can look back over my life, and see all the times when He just turned me around, and pushed me off in another direction. And, it always turned out to be the best direction I could have taken. With the fact that WM is incurable, and prognosis is around 5 to 6 years, I have already taken up about half of that. When I first began to exhibit symptoms, ( foot pain) I had no idea where to start for relief. I was going to a chiropractor at the time, and when I mentioned the problem to him, he took pictures of the bottom of my feet, and I wound up with what was called "foot levelers". I tried them, but eventually gave up, as the pain didn't go away. I went to a podiatrist, and he prescribed SAS shoes. Tried that as well, but to no avail. Pain worsening by now.
My daughter, who is a RN told me to go to a neurologist, as she believed it was nerve related. Bingo! As I mentioned in my first post, both the neurologist, and the hematologist were top notch. Again, that "leading" by Him. So now, we continue with the Rituxan for now, but, time is ticking away. You tend to gravitate to Him a lot more than you ever have in your past, I'll guarantee that. We all have to go, but when the time frame is posted, you tend to pay closer attention to things than you ever have before.
Hope I haven't bored you. Take care