Join Date: Sep 2012
I am new here, and ]I would like to share my story with you. Maybe it is similar to something someone else is going through. Maybe you might have some idea's that you have found to make things better. I hope if nothing else it may help someone going through their journey the feeling of not being alone.
About 3 years ago I slipped and fell on the ice and hit the back of my head. I didn't notice any severe pain or discomfort that made me feel any serious reason to see a Dr. I just paid attention to how I felt during the day. I felt fine, normal. A few month's later I was in an auto accident and had whiplash. My head had trouble with movement. I went to Pt and everything seemed to improve. I seemed to be back to normal. I then became ill with what was the weirdest illness I have ever had. I would get sick at night, I would wake up the next day and feel fine. I didn't feel like I had the flu just a weird feeling of illness for the night.
Then I would come home, and I would feel so sick all night. The next morning same thing felt completely fine no problems. This went on for 3 weeks. I was getting ready to call my dr to see what they thought the following Monday because I just couldn't figure it out. I had no fever, just sick at night. I became so sick over the weekend, with fever, but by Monday I was perfectly fine. After that I returned to normal perfectly fine. I then started having severe fatigue in my shoulder's and neck.
I thought it was stress from life in general, and working at a computer for long periods of time. It got so bad that I became frustrated with myself, and trying to figure out how to make myself just relax. Seems funny in a way, but tried everything to talk myself out of feeling so stressed, and fatigued. It then hit like a bolt of lightening, my left arm a pain level of 10 while at work. I called a PT because I thought I had pinched a nerve in my shoulder, or arm that was causing the issue. I got right in, and he told me he couldn't help me. I wasn't able to hold my head straight, the pain in my arm was so bad I thought I was going to be sick. He told me I needed a neurologist asap.
He told me that he thought I had cervical dystonia and he couldn't help me. I was then seen by the neuroligist. I gave him all this info and he asked why he was just now seeing me. I know now looking back I should of been to my Dr a lot sooner, but it was just random things that happened. Each thing I seemed to manage through and felt ok. Well, ok other than the nagging feeling of stress and fatigue. I just thought it was normal, as life can get stressful at times. I just thought I was being silly letting things bother me. He ran a nerve conduction test on my left arm. All nerves were weak, he said I had cervical dystonia,. He let me know that he wasn't sure about my arm, but told me he was glad I was right handed. He said that he believed the cause was not just one of the above incidents, but the combination.
The illness that I had showed up in my labs it was H1N1. He said that they have found that it has caused nerve damage in some people that have had it. He started me on a muscle relaxer, and Benzatropine. The medicine amazing!! I felt great, the movement stopped, the pain was tolerable. Everything was easing for me, but I lost the ability to think. I wasn't able to spell simple words, or remember simple tasks. I was making silly mistakes at work, and became so frustrated. I went back to the Dr and let him know that I couldn't do this medicine and continue to do my job.
He told me my only other option was Botox injections. I didn't want to do that, one it is a poison with risks, and two the cost factor. I then seeked another Dr for other treamtnent options. We altered the medication, did MRI's X rays, brain scans, reviewed all of my history. It was during that time that I realized I had a symptom that only happened once that was years before any ot this happened. i was sitting on the floor, and I lost the ability to move my legs it was as though they were paralyzed. It took me 3 times to try to move them and finally I was able to. I told him I remember sitting in the chair wondering what just happened, but it didn't happen again. I waited and watched for any other sign or problem that I would need to call a Dr. I never gave it another thought, until we were talking.
We tried another medication Baclofen, and then L-dopa. I was so sick, I was on the bathroom floor most of the day and night. I couldn't get up to the 2nd dose of the medicine without being so sick. I called and went back to the other med. I was so frustrated, he then told me injections was my only option. So, I did it. 15 injections in my neck and shoulder. It helped, the tremors and the movement seemed to ease and be a lot more manageable, but had to remain on the meds. He told me I wouldn't be able to go with just the injections due to the severity. By the time the end of the year I was up to over 10,000 in medical cost in 3 mos time. The injections I need to have every 3 mos, and though my insurance covers pretty well, I still have a lot of out of pocket expense.
It is hard to want to spend 5000 a year on injections when it is just a 3 mos temporary fix. I am now back on L-dopa's, after spending a lot of time taking small doses to get up to the dose he wanted me at. He also gave me another pain medicine muscle relaxer zanaflex. I find the muscle relaxer sometimes to make the weaker muscles weaker, and my ability to fight to keep my head straight even harder. So I limit my use of that med to just a very low dose at bedtime. I am also trying yoga with no injections. It is hard, there are days I just want to give up, then the next day I feel that I can do this that if I just excercise more, get stronger that I can battle this and win. I get frustrated, and sad to think that simple things that happen can have such a large impact and change your whole life.
i think maybe if I would of went to the Dr sooner that it would of been stopped before it got this bad. I just honestly didn't think that since I wasn't having serious issues that I wasn't ok that it was just what it was and it got better, and things would be fine. Never did I think this would be the end result. It is hard, it has changed my life. I plan things on how I feel, how bad the tremors and movement are on if I will go out with my friends or if I just go to work. I try to keep a low profile at work so noone will see. I would give anything to go back and make different decisions that may of made a difference. I can't though, I guess we only get one chance to make the right decisions, and I missed it maybe.
The truth is who knows, maybe nothing I would of done would of changed the path I am on, and the end result may of been the same. I am just hoping that someone else may know of a treatment that has helped outside of doing the injections. The price tag is a little high for something that is only a 3 mos fix. I am trying to rely on my inner strength, and belief that I can beat this.
The Dr's tell me it is going to get worse, that the dystonia is in my neck and arm. They tell me there are other things happening, but no Dx yet. I have sensory ataxia, tremors, facial numbness and the movement. I believe in the ability to fight, I just look at all the people whose Dr told them they would never walk again, and they run marathons. i believe that if I can just find the key that holds my ability to feel like my normal self, then when the attacks happen I could change it. I wish it was more just an interrnal pain that I could hide, and noone would know about it. This is something no matter how much you don't want to have this be wrong, how much you don't want anyone to know you can't hide. People look at you, and watch trying to figure it out. The truth is as they look at me; they have no clue how much I am asking the same question, "why"
Thank you for letting me share my story, believe me I know I don't have it as bad as some. There are far worse illnesses than this, but don't be mistaken by the daignosis of Dystonia though. It is a very painful brain injury no matter what the bottom line cause of it is, and the impact on one's life is significant.
I wish everyone the very best, and open for any suggestions you may like to share with me.