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A diagnosis after 9 years

PostPosted: May 9th, 2016, 8:54 am
by AndyTwitchalot
Hey folks,

I thought I'd check in since I used to post here a whole lot, and I finally got a diagnosis this past December. The doctors told me I have something called Post-Irradiation Motor Neuron Condition. I've also seen it called Post Radiation Motor Neuron Disease. I had cancer when I was 12 and radiation was part of the treatment, and apparently there are some cases where damage to the motor neurons is a long term side effect to treatment like this. The doctors checked me out, verified that something is not right, looked at my medical history, and made the diagnosis.

There's not a ton of information out there, but the prognosis as far as I can tell isn't great. It's definitely better, or at least much slower, than ALS. I'm grateful for the past nine years of my life, because even though they've been filled with non stop twitching and other medical curveballs, in many ways they've been the best years of my life. I met my wife eight years ago and we've been married for five, and life has been excellent overall.

In some ways that makes this even more of a struggle, because I feel like if it weren't for my muscle problems, life would be close to perfect. But unfortunately these muscle problems continue, and continue to get worse. The doctors kind of have a "wait and see" approach, but really, there's not much it seems that they can do. I'm holding out hope that there will be some progress on motor neuron disease treatment in the near future while I still have most of my functions still available.

When I got the diagnosis, I felt a lot of relief, even though this is a tough medical problem to have. It was always frustrating and scary when my symptoms would get worse and I had no idea why. The doctors had no answers and I had no idea how to talk to people about it. I'm still trying to figure out how and when to tell most of my friends and family what's going on, but the diagnosis makes talking about it a bit easier.

I suppose I'm writing this post for three different populations: The first is for other people who come across this message board who have had radiation treatment. You should discuss Post Irradiation Motor Neuron Condition with your doctor as a possible cause of your symptoms. Despite all of my searching, doc appointments and research, I had never really heard about it until last year. Also, take comfort in the fact that it's not ALS, and it can be extremely slow to progress. I've had this for nine years and I can still get up and go to work every day, and enjoy my life despite the difficulties this conditions presents.

The second is for everyone else searching for answers. There was a time where I thought I either had BFS or ALS, and there was really no in between. These fasciculations were either benign, or indicative of ALS. Turns out there are a whole bunch of things in between that are worse than BFS, but far better than ALS. Back in 2012, I made a post where I listed ten pieces of advice based on what I had learned over the years, and it all still stands, even though I would word a few of the things differently these days. You can find that here: http://www.aboutbfs.com/forums/viewtopic.php?t=17739

The third is for all my old friends on here. If you see this post, hi! I hope you're doing well. Thank you for all your help and support in the early years, when this all started, and I was struggling with it the most. I hope you're all living life with the least amount of intrusion from twitching as possible.

This is probably my last thread, since I officially do not have BFS. If anyone has any questions or wants to talk I'll definitely check back in on this thread a few time. You can also feel free to send me a PM. I think I still get email notifications if a PM comes through.

Be well, everyone!

Andy

Re: A diagnosis after 9 years

PostPosted: May 12th, 2016, 11:44 pm
by leaflea
Dear Andy,

Thank you for your story. I read through some of your other posts and want to tell you two things - 1. you are a wonderful writer and 2. you are inspirational and insightful .

Wishing you all the best!

Re: A diagnosis after 9 years

PostPosted: June 2nd, 2016, 12:33 pm
by AndyTwitchalot
Thank you! All the best to you as well.

Re: A diagnosis after 9 years

PostPosted: July 27th, 2016, 1:35 pm
by seanrblock
Andy-

We used to talk a LONG time ago. I had read about radiation induced illnesses but never for something like this. I'm very sorry to hear this, but I hope you have a very slow progression. I will be thinking about you man.