Skip to main content

Is this what a storm feels like?

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.

Comments

Post a Comment

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...
13 comments
Read more

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able ...
8 comments
Read more

Updates ❤️

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...
Post a Comment
Read more