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dystonia


I know I have been going off topic lately with my blog, which started out about dystonia but my family is just so much more fun to write about.  Anyway, here’s a little update about me.

As you may have read in my previous posts, my foot has been stuck since I was about 23 weeks pregnant.  My neurologist didn’t want to change my DBS settings while pregnant because they didn’t know what the risks would be to the baby.  I sucked it up and now my baby is 6 weeks old and I still have not seen anyone!  I am trying to get in to see my doctor but he is on vacation all month.  He said I could see someone else in the office but I can’t get through to talk to anyone.  I have adjusted to my foot like this and found shoes I can wear but they are winter clogs and I have already had to buy a new pair because they were so worn out.  Once the warm weather comes, I would really like to wear flip flops!! 

Other then my foot, I have had some issues with my jaw.  The right side of my face hurts really bad sometimes when I eat and swells a little.  It comes and goes though so sometimes I have no problems at all.  My hand has been great until today.  I woke up and my left hand felt really crampy.  I thought I had slept on it or something but then I could feel my fingers tightening and pulling in.  I tried massaging it and now my hand is in a fist again.  Hopefully I will hear from the doctor soon so I can get these problems fixed.  I think the more stressed I am, the worse my spasms are and it is very stressful having my little baby boy have heart issues. 

Lets all pray that everything works out and we all get better soon!!!

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update on Dystonia and Family

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It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found ou...