A Thank You Letter to the Neurologist Who Saved My Life

I have talked a bit on different platforms about the long struggle that it was to get diagnosed many times before, and about my initial diagnosis of Dopa-Responsive Dystonia that my body proved wrong.  My initial diagnosis however set me on the course to getting the proper treatment when I was 18, and I cannot thank the general neurologist who managed to think outside the box and save my life.  I wanted to write him a thank you letter, but I have more to say than the 1000  character limit of my insurance’s email platform, so I decided to write the letter here and send him the link to my blog.  It is a nice thing to share here too.  Let it be known that without Dr. Wei, I would not be here today. 

Dear Dr. Wei,

It has been years now since you have seen me, I believe I was 19 or 20. Now I am a few weeks shy of 23.  The reason that I am writing to you is to say thank you, I would not be alive today if you hadn’t put the initial pieces of my diagnosis together back in 2012.

My life is complicated for sure, but it is amazing.  I went downhill pretty fast right after I turned 20, 2 years to the month after I started taking Sinemet I developed some severe Ldopa induced dyskinesia. From there it was a rapid decline until I was barely able to get up out of bed, I gave up driving, I could not walk safely without a cane at the least.  I had my first DBS (unilateral) on June 1, 2015 and my second on Dec 16, 2015.  The results are amazing to say the least. I could run around for the first time in years when they programmed my DBS.  I still take a ton of PD meds but it works. I have a great MDS neuro down in San Diego, she is worth the drive.

It doesn’t end there though, my gut shut down (gastroparesis and intestinal dysmotility) and I got a J-tube on December 2, 2015, about two weeks before my second DBS.   I was so miserable from starving, I was throwing up everything I was eating and I had no appetite.  Previously I was so active and then I was down to 105 lbs at 5’8”.  The tube was working for a while, it definitely improved the delivery of Sinemet (which we think is part of why I declined so fast). I ended up rejecting all of the formulas though, I was not able to get enough calories or hydration and even though I was running it for 24 hrs a day I was losing weight still.  I then ended up on TPN. I can’t eat at all really, but I have accepted that because I was so sick from the starvation, that I can handle being hooked up for 12 hours if it means I have the energy to go out and do what I love and live my life.

Despite all of the health challenges, and because of them too, I have gotten to do things that no one expected of me.  I graduated college in 4 years despite having two brain surgeries and a feeding tube put in.  I studied chemistry and then took time off to recover (I started TPN right after graduating.  It has been a year and a half, I was down to 100 lbs and now I am at 140 and feeling amazing).  I took the time to get to speak at amazing conferences like World Parkinson Congress and Stanford Medicine X.  Now that I am stable, I am going back to school for science, which is truly my passion.  I am applying for my doctorate in pharmacology.  My top choice at this time is UCSF, but I am still looking around.

The reason I am writing this to you is to say thank you so much for never giving up on me.  There were so many doctors before you who said ‘if I cant figure it out she must just be a dramatic teenage girl’.  You never stopped believing that someday we will find the answer.  I remember going home a few months before you trialed the Sinemet in October of 2012, where you really thought a panel we sent would show something and it didn’t, and there was nothing left at that time to do but wait.  I was devastated, I cannot explain how awful it is as a patient to be left without answers.  But you said ‘come back in a few months, I don’t have answers but this isn’t the end.’  Just by saying that you knew that no doctor can know everything, that just because you didn’t have an answer for me didn’t mean that I was not sick, that gave me more hope than I can even describe.  There were appointments where after talking to a doctor I would be so distraught that I would literally sob in the elevator, because all I knew was that my body is failing and no one is even trying to help me.  But after that appointment, in the elevator, I looked to my dad and just nodded.  I was of course upset that we didn’t have answers but for the first time in almost four years someone had not given up on me, and I can’t thank you enough for that.

I also can’t thank you enough for the wild idea to try Sinemet.  I honestly did not think it was going to work.  I went back to college with the rx and as it started to work I kept telling myself it wasn’t true. Two weeks later I went home for a weekend to visit my family, and they cried when they saw the difference in my movements and how much better I was moving. 

It saved my life and I mean that literally.  It set me on a path to figuring out the full puzzle of my diagnosis and the treatment gave me two absolutely beautiful years where I almost got to be a normal young adult.  Yes, I was always taking medicine and there were really painful and rough days, there was no doubting that I was still pretty sick, but I was managing really well.  I even got to do a Summer Fellowship in Baltimore at the Institute of Human Virology and live on my own on the other side of the country for a summer before things all went bad, and I really excelled academically.  Because of what I accomplished in the first two and a half years, I basically got away with taking 12 unit semesters for the last three when I was too sick to get up to go to class half the time.  But if you hadn’t made that initial discovery, I am pretty sure I would be actually dead right now.  Before my DBS I was having major issues swallowing, and I was frequently in the ER for freezing episodes which were so scary.  About two months before I had surgery I had woken up one day unable to walk or talk, though I was fully conscious.  I was taken to the hospital via ambulance and it took all day and a lot of benzos for me to be responsive again, there was nothing else anyone knew how to do. My quality of life was just awful.  Now even though I take 20+ pills a day and a patch, I run infusions for part of the day and have both a central line, a J tube, and a DBS unit, my life is an amazing and beautiful mess and I wouldn’t have it any other way.  I get to follow my dreams in a very different way, but it is mine and it is only here because one doctor had the compassion to never give up on me. 

All the best,
Jasmine Sturr