She was shakin'!

I've developed a new symptom: twitching and shaking. It's called Dystonia. This blog post is the full story of what happened. Warning, this is a long blog post, but I really wanted to share this experience with all of you.

On April 19th I was tagging along with two of my girlfriends who had appointments with their Dr. in Los Altos. I was riding in the back of the car and I wasn't feeling so well. I went inside to sit in the waiting room with them and people kept asking me if I was feeling alright. I finally realized that I wasn't. Their Dr. looked at me with concerned eyes and offered me a place to lay down and some oxygen which I gladly accepted. When I got up to walk I was weak and a bit wobbly. After a few minutes on the oxygen I started twitching. Really it was more like full body writhing and convulsing.

My friends were concerned and they got their Dr to take a look at me. I knew something wasn't right. In fact I knew something was really wrong and I've only felt that way once before. I knew I wasn't okay. He let me lay there for about 30 minutes and I wasn't getting any better. My friends called my Dr. and let him know what was happening. Meanwhile their Dr did a basic exam, gave me an adjustment of one of my ribs that was hurting, and sent me to go see my Dr. in Redwood city. Every time I sat up the writhing got worse. I didn't have full control over my speech, my heart was pounding, I was hot and cold, and I felt like I was going to pass out.

My friend pulled the car up to the front of the building, but I couldn't stand to walk. I could barely keep my eyes open. Their Dr. had to pick me up and carry me out to the car. My wonderful friend zoomed up the freeway to my Dr. in Redwood City. He came out to the car where I was twitching and shaking. I tried to walk with one of them on each side of me, but my legs wouldn't support me. So, my Dr picked me up and carried me until someone else met us with a chair.

My Dr. ( Dr. G) hooked me up to an IV of sodium chloride and let me rest in a reclining chair for a long time. I started realizing that the more I stayed flat on my back the better I felt and that when I sat or stood up I'd start shaking again and my speech would get weak. After a while the shaking calmed down, but I was still really weak and tired so he switched me to a dextrose IV to try to perk me up. After almost 4 hours of IV I started feeling a little better then when I arrived and I knew my friends needed to get out of there so we headed back home.

I sat reclined in the car on the way home and was able to be still for a while. Then when we arrived home I walked from the car to the house and I started twitching again. I was so fatigued that I just laid on the floor for a bit to rest.

The next day my husband took me to the urgent care. Let me tell you if you ever want to be seen immediately and get 6 nurses in your room at once just tell them you're convulsing or having something that looks like seizures and they'll rush to help you. It was all a bit overwhelming. I got another IV, some med to try to stop the shaking, basic lab work, and a CT of my brain. Once they determined that I wasn't dying, they sent me home saying it should pass. WHAT!?

After waking up again to awful shaking and barely being able to get around our tiny house my husband decided to take me to the ER at Dominican. I saw several nurses, a Dr, and a neurologist. He did a basic exam and even though I could barely walk and was convulsing, he said I had a "normal neurological exam" that he'd "seen this before" and that "it should pass on it's own." WTF! I wanted to punch him in the face. This is not normal by any means! They didn't even try to figure out what was happening to me. One day I'm feeling great and the next I can barely walk or talk and that's considered normal?

Meanwhile, my wonderful Dr. was calling and checking in with us and brainstorming ideas about what to do now. We started calling for info. on getting seen at Stanford, UCSF, and with any other Lyme literate professional we could think of. Finally the DR. who's office this started in called us to check in and suggested I see a DR. A, a Lyme literate neurologist/chiropractor in SF.

We made an apt with him and I'm so glad we did. After a very through 3.5 hour evaluation we discovered that my brain isn't working correctly. I couldn't smell out of one side of my nose, my muscles are weak, some are barely even working, I can't feel movement in all of my toes and fingers, etc. He said that I have a condition called Dystonia. It means that the part of my brain that controls movement isn't telling my body to stop moving so I'm moving involuntarily. The right side of my brain is especially effected which is causing the left side to be weak and malfunction, and the two sides of my brain aren't communicating well.

This condition can be caused by a number of things. In my case we're thinking that something caused a hole in the blood brain barrier and things are getting into my brain and causing it to misfire. I'm told that it could leave as quickly as it came on or it could stay for a long while. There is no "cure" for it, but there is a lot that can be done to protect the body, support it, and encourage the right parts to start working properly again.

In addition to all of this he showed me on my X-rays where my spine has pulled to the right, my neck doesn't curve, a disc is wearing, and I have spina bifida. WHO KNEW!?! I didn't. But it turns out one of my vertebra isn't fused together properly.

In essence I'm a hot mess right now. I'm trying to stay positive and do as much as I can. I visit with friends, sit outside and have even gone out for dinner. Some days are good and some are super funky. Some days I can do a lot and some I can't. What I have figure out is that I need to rest a lot, talking (esp on the phone) makes it worse as do too much stimulation, loud noises, or lots of moving around.

I've been having to ask for help a lot lately. Help with errands, driving, shopping, cleaning, etc. I just can't do what I was able to do just a few weeks ago. Lots of people have offered their help and many have been super helpful and supportive. Thank you!!

To make things easier for me I've created a website via Lotsa Helping Hands. I can enter in requests for help and those who want to can sign up to help out when it works for them. If you're interested in being on my support team please check out my website and sign up to be part of my team Keri's Helping Hands. <-- Just click those words to visit my site.

Thanks to everyone who has stepped up to make sure I'm okay, especially my husband who has really risen to this new challenge. I couldn't do this without all of you. Thanks so much!

I'm really tired now. I think I'll go lay down.