New Year, New Diagnosis

There is way too much that has happened in the last year to update this blog with the details, but I will try to sum everything up.  Over the last 2 years, I have continued to have ascending paralysis episodes approximately every 3 months.  I have seen multiple neurologist for this as my neurologist was stumped.  It was decided pretty early on that this could not be from MS.  My MRI remained free of lesions still.  After 12 years of aggressive disease, there is no way I wouldn't have lesions.  So now I was without a diagnosis at all.

In June of 2019, I went to a different hospital for my paralysis and saw a different team of neurologist.  I had some of the tests repeated during an acute attack that had previously been done between episodes.  They remained normal.  This neurologist thought that I had Functional Neurological Disorder.  She explained that this disorder is like having a software problem in your brain.  All the computer hardware (you nerves and brain) work just find, but the software is all messed up.  We all know what kind of problems a computer can have when the software is messed up.  She sent me to the website www.neurosymptoms.org to learn all I could about the disorder.   We spend the weekend reading the entire website.  I had a lot of questions.  There were things I felt didn't fit.  One of the most important things we read is that if you don't accept your diagnosis, you cannot ever get better.  The way you get better is to reprogram your brain, but I couldn't find any information about how that is done.

Over the next 6 months, I had all of my questions and concerns answered and finally was able to accept the diagnosis just before Christmas.  My neurologist didn't know much about it, so I started seeking for a provider that could help me with "reprogramming my brain".  I found that had an FND clinic at the Mayo clinic.  I was able to get an appointment at the Arizona clinic, but a few weeks prior to my appointment, they called and cancelled my appointment because they don't treat FND at that location, despite the fact that I asked 3 different times and was told that they did in fact treat it there.  They referred me to the Minnesota location.  I called for an appointment there but my case had to be reviewed by the doctor before I would be given an appointment.  I gave them as much information as I could about my medical history.  I got an email 2 days later than I would not be offered an appointment.

My PT, Irina, has been amazing.  She is certified in neurology, but didn't know anything about FND.  That isn't stopping her.  She has been researching the disorder and trying to find out how to use physical therapy to help me.  In every publication I have read, it states that PT, specific to FND is a vital part of recovering both from the weakness associated with FND and reprogramming the brain.  Irina has asked me to keep a journal of everything I do every day and how I feel both physically, mentally and emotionally.  I plan on using this blog for that purpose.  She is hoping by keeping this journal, we can figure out a trigger for my flare-up.  If we can find a trigger, maybe we can avoid that trigger. 

The other thing I will use this journal for is to help me as I write my book.  I started writing a book about 6 months ago about the trials of my life and how they have helped me build my testimony, understand the Atonement of Jesus Christ and made me the person I am today.  Now that I have this FND diagnosis, I also want to use it as a way to help other people with this disorder.  There is a serious lack of information about this disorder.  Part of the problem is that it is a fairly new disorder.  It is similar to conversion disorder, and some doctors will use the name interchangeable, but conversion disorder has a definite psychiatric cause.  FND does not.  For some people, there is a history of trauma prior to the onset of their disorder, but not for everyone.  Some have a history of other medical problems that trigger the disorder.  They have not found a definite things that triggers the brain to go haywire like this.   They also haven't found a definite way to reprogram it.  The doctor who diagnosed me made it sound like that reprogramming was possible, but the information I have been finding says that most patients only get slightly better at times, but then have relapses, much like MS.  The only difference is there is no permanent damage to the brain like there is in MS, at least that they know of.  There is a lot of research being done on this disorder now.  They have discovered that functional scans of the brain of FND patients do show abnormalities.

So, in the past, I have not done a good job of keeping up with my blog, even when I really wanted to.  I hope I can do better this time since it is important that we try to find a trigger.  My goal is to post about 3 times/week, maybe more.