Before I had a name to my disease, I was calling it Godzilla Disorder.
…Okay, yeah, I need to explain that one.
I didn’t have a name for my problem, only symptoms. Only theories. And so, when someone asked why I was limping, I had no real answer. Just vague theories. “I have some kind of neurological thing going on.” Hand-wave. Again. How do you break that to someone who’s only a casual acquaintance, anyway? “Just losing my ability to walk, thanks. How are you?” While complaining about this dilemma to my very patient best friend and main babe Danielle, she suggested I just tell people “I got attacked by Godzilla in the legs.”
And this is why we love Danielle.
And so ever since, I refer to this as Godzilla Disorder. Even now that it has a proper name. A name scarier than Godzilla. Someone later asked if I called it Godzilla Disorder because it made me walk like I was in a rubber monster suit. Which also made me laugh. Thankfully this was pre-braces, so my walking is SO much better now. I’ll have to attack Tokyo another day.
So, to get to the REAL reason for this post. It’s about back when I was still calling it Godzilla Disorder because I had no name for it. When we didn’t know what was going on, and I’d been through a lot of doctors and tests and MRIs and a spinal tap, I noticed that everyone had their pet theories for what was wrong with me. I had many people playing Dr. House and suggesting obscure things that aren’t ALS or a neuropathy but have similar symptoms. Could it be a vitamin D deficiency? Lead poisoning? Shellfish poisoning? This other, obscure disorder that has maybe 3 documented cases in the US but it’s worth a shot to look in to because it just causes weakness in the feet and stops there?
I’ve noticed this is a pretty common way for people to react to a scary medical unknown. It’s curious as a coping mechanism – you feel powerless to help, so you look for answers and try to be helpful, just in case the doctor ‘forgot’ something. And I’m sure there are doctors that have overlooked everything. It’s really tempting to think that maybe it’s not this complicated, maybe I just need to take some supplements and be cured! And there’s the tiny, egotistical desire to find the problem and be the fixer!
For example, my aunt asked me to tell my neurologist about the time I got really really sick from shellfish (on my BIRTHDAY. We rented a cabin on a really awesome bed and breakfast THAT WAS A BOAT ON THE OCEAN -fucking awesome and I was looking forward to it for WEEKS – and we checked in and then went out to a really nice lobster dinner that I didn’t even get to eat because we started with steamed clams and I won the shellfish lottery and got CRAZY SICK from one while everyone else was fine and I spent the rest of my whole amazing romantic birthday trip throwing up. FUN TIMES.). She’d read that shellfish poisoning can actually stay in your body for years and cause problems that mimic neurological disorders.
First of all, good memory, Aunt Phyllis. Second of all, way to do your research!
All of this isn’t a rant – I’m not complaining about this at all. Far from it, actually! I am totally fascinated with this, and I’ve learned some really interesting things. There are an AMAZING amount of things that mimic symptoms of ALS. And it’s important for those I love to cope with this in their own way, and sometimes that way includes researching for that one thing that I might have that is totally curable. Something, anything that isn’t ALS. Anything to remove Godzilla’s teeth. Here, just take these vitamin D pills and it will all just…go away.
A lot of people in my life have done this, with a few really ardent researchers. Like Lance. Research is what he does, in all things. When things first started coming to light, every day he had a new wiki entry about some new disorder – and they were all about obscure disorders that get better with treatment, or some weird variant of a scary disease that is a not so scary version of it. Always something optimistic.
I’ve told my friends and family that I am happy to forward these thoughts along to Dr. Goslin; she’s never been insulted or offended with my questions. In fact, she responded to Phyllis’ food poisoning theory with, “I don’t think you have this, but I appreciate that people are continuing to think about this.” She’s amazing.
Sometimes, it has actually been useful – my brother suggested I tell her about the genetic defect that I share with my brothers, because apparently it has been shown to have a possible link with neurological disorders. I had no idea. My neurologist is very interested in that research, and has asked me to find out which particular variety of that defect I have, because there’s like 200 of them. If I find out, and there’s a link, then I can help that research by becoming a data point. So, by all means continue. I know that it’s important for you to feel like you have some control over what’s going on, to be helpful.
And who knows, maybe you WILL find the answer and it will be simple.
Just, please don’t be offended when I shoot down your theory with, “I’ve been through that line of reasoning, here’s what came of it.” I’ve been tested for heavy metals. At this point I’ve been tested for every damned thing missing or present in my blood. And my spine. Yes, the doctor has heard of that disorder. And that one, too. She’s a neurologist specializing in motor neuron diseases, she’s very smart.
And she has access to Wikipedia and WebMD, too.