A couple weeks ago, as I had mentioned before, my hand curled back in. I tried to contact my doctor several times to help not only my hand but the very painful back spasms as well. I never heard from him, which was unusual because he always emails me right back! I finally called the office again and they told me he was on vacation for two weeks and another neurologist was seeing his patients. It took a few days to finally talk to this doctor, who agreed to see me last Friday. I was having a lot of facial twitching and my hand was still curled in. She decided to change my settings on my DBS a little but didn't want to mess with it too much since she wasn't my regular doctor. She changed the settings and almost immediately after, my whole body went into spasm. My foot curled in, my neck pulled back, face still twitching, hand and wrist curled and back twisting. I have experienced this only a few times before and never at the doctors but I guess its better to happen there then anywhere else!
She put the settings back to where they were when I had gotten there and the spasms stayed the same. She had me lay down to try to relax but nothing seemed to make it better. She sent me home and told me that my doctor would contact me to see me this week. I was all alone so it was kind of scary walking out to my car like that then driving home. But, I made it.
My doctor returned to the office this past Monday and I didnt hear from him by Wednesday, so I emailed him to see if he had heard what happened. He said he had and agreed to see me on Thursday (yesterday). This time, my mom came with me! He changed the settings a little and my hand opened a little. He had me wait an hour then go back to see him so he could do more changes. I went back and he changed them a little more, and my hand opened a little more. This time, as my hand opened my foot curled in. He had me wait another hour and when I went back, he decided he wouldnt change anything else. My hand is about half way opened now but now I have to walk on the side of my foot. Im not sure which is worse, not being able to use my hand or my foot. I am beginning to get blisters on the side of my foot and my baby toe. The doctor wants to see me again next week, so hopefully everything will be better soon!! Still praying and still fighting for a cure! Who's going to help me win this fight????
Dont forget, the Dystance4Dystonia walk is only ONE week from tomorrow!! Thanks for your support.
She put the settings back to where they were when I had gotten there and the spasms stayed the same. She had me lay down to try to relax but nothing seemed to make it better. She sent me home and told me that my doctor would contact me to see me this week. I was all alone so it was kind of scary walking out to my car like that then driving home. But, I made it.
My doctor returned to the office this past Monday and I didnt hear from him by Wednesday, so I emailed him to see if he had heard what happened. He said he had and agreed to see me on Thursday (yesterday). This time, my mom came with me! He changed the settings a little and my hand opened a little. He had me wait an hour then go back to see him so he could do more changes. I went back and he changed them a little more, and my hand opened a little more. This time, as my hand opened my foot curled in. He had me wait another hour and when I went back, he decided he wouldnt change anything else. My hand is about half way opened now but now I have to walk on the side of my foot. Im not sure which is worse, not being able to use my hand or my foot. I am beginning to get blisters on the side of my foot and my baby toe. The doctor wants to see me again next week, so hopefully everything will be better soon!! Still praying and still fighting for a cure! Who's going to help me win this fight????
Dont forget, the Dystance4Dystonia walk is only ONE week from tomorrow!! Thanks for your support.
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