Page 1 of 2

Check in/Top 10 pieces of advice from a twitching veteran

PostPosted: June 18th, 2012, 11:45 pm
by AndyTwitchalot
Hey folks,

Just wondering what's been going on here in the past few years. Have there been any stories of people getting to the bottom of their twitching? I remember there was one guy many years ago who found out he had calcium deposits pushing up against his spine, which were causing his facisculations. I loved that story because it's so rare that people with weird neuro symptoms like we have end up with such a clear "here is the problem, and here is the solution" reports from our docs. Hopefully that guy has moved on and his twitching days are a faint memory by now.

I'm a weird case for sure, reassuring in some ways, and not so much in others. I started twitching about 5 and a half years ago, and I've since progressed to having worse symptoms, but not an MND. So I'm in the worse-than-BFS, better-than-ALS spectrum. I think it's important for people to know that this spectrum even exists, because I've seen a lot of worriers (myself at times included) jump from "well if it's worse than BFS, it must be ALS!" or even "if they don't know what it is, what else other than ALS explains it??" I don't know what I have. The doctors don't know what I have. And my story is not all that unique-- the world is filled with people who have ambiguous, undiagnosed conditions.

I've stopped in every now and then to say hello, but have I missed any breakthroughs or stories? How is everyone doing around here these days?

Cheers,

Andy

Re: Anything new? BFS Updates? (Old timer here)

PostPosted: June 19th, 2012, 1:41 pm
by SuziQ
Other than our previous theories of being abducted by aliens who have subjected us to endless rectal probes and swept our memories clear of any recollection of their gratuitous exploitation, I don't think we've discovered any magical answers yet, old friend. :twisted:

It's nice to see you though.

Blessings and cheers back atcha.
Sue

Re: Anything new? BFS Updates? (Old timer here)

PostPosted: June 19th, 2012, 8:07 pm
by mike fla
Given the wild imaginations of our BFSer's I am surprised that alien abduction and rectal probes has not been a more common topic.

Re: Anything new? BFS Updates? (Old timer here)

PostPosted: June 19th, 2012, 9:04 pm
by volfan
I have requested that the rectal probe be relocated to another body part. If you catch my drift. And I would prefer that it be performed by Johnny Depp and not some random alien. However, I am only into this BFS "thang" for 6 months so. After another year or so, I might be willing to consider other alternatives.

Re: Anything new? BFS Updates? (Old timer here)

PostPosted: June 19th, 2012, 9:51 pm
by johnnythejet
volfan wrote:I have requested that the rectal probe be relocated to another body part. If you catch my drift. And I would prefer that it be performed by Johnny Depp and not some random alien.

Haha, I love it!

Re: Anything new? BFS Updates? (Old timer here)

PostPosted: June 20th, 2012, 12:46 am
by Missi
I'm SO not a fan of twitching!! I would like a rest!! Just for a day to ease my stress!! That would be great! Lol but I keep waiting... And twitching! Ugh!

Re: Anything new? BFS Updates? (Old timer here)

PostPosted: June 22nd, 2012, 9:33 am
by AndyTwitchalot
Suzi!! Great to see you're still here. I hope you're doing well.

Bummer about the no magical answers thing. I keep hoping I'll come back here someday, the place will be almost empty, and there will be a post about how it's been discovered that a small village in Ireland makes a type of whiskey that inexplicably cures twitching.

I will continue my experiments with Irish whiskeys in the name of research.

Re: Anything new? BFS Updates? (Old timer here)

PostPosted: June 22nd, 2012, 9:54 am
by raindog
AndyTwitchalot wrote:Suzi!! Great to see you're still here. I hope you're doing well.

Bummer about the no magical answers thing. I keep hoping I'll come back here someday, the place will be almost empty, and there will be a post about how it's been discovered that a small village in Ireland makes a type of whiskey that inexplicably cures twitching.

I will continue my experiments with Irish whiskeys in the name of research.


I'd guess its better than 90% of the stuff we are given my doctors :mrgreen:

Re: Anything new? BFS Updates? (Old timer here)

PostPosted: June 22nd, 2012, 11:29 am
by AndyTwitchalot
Since I'm here, maybe I can offer some advice to any newcomers, from an old-timer (weird calling myself an old timer when I'm only 30...I've been twitchin a while is what I'm saying.)

This is all of the knowledge I've picked up in the past 5 1/2 years, and most of this (ok all) will be redundant info that's been said on these boards over and over.

1) See a doctor. Muscle twitches are normal, but if you're twitching at an abnormal level, the first thing you should do is to get checked out by a medical professional. Have them run blood tests, make sure all your levels are okay, ensure you're not deficient with your vitamins, etc. If they say you're cool, trust them.

2) Stay off of the internet for medical stuff. It's good to come to a place like Aboutbfs to see that you're very much not alone, but if you're relying on internet information to diagnose you, or even make you feel better, it's not healthy. One day you'll read something that will make you feel so much better and relieve anxiety, and the next day you'll read something that will shatter the same assurance that was built up the previous day. There's misinformation that will make you feel better, and there's misinformation that will make you feel worse. Trust your doctor, get a second opinion if necessary, and carry on with your life. The internet is here for cat videos and boobs (and education, knowledge, community and all that stuff. But it's mostly cat videos and boobs.)

3) Accept the twitches. You twitch. It might go away tomorrow, it might never go away. You have to be cool with either scenario. Life is filled with things that you can't change, and you're only hurting yourself if you try to resist that. It's like aging -- kick and scream all you want, but the people who are the happiest are the ones who embrace it, not fight it.

4) Keep some perspective. No one wants twitching. But no one wants migraines, or MS, or abusive parents or car accidents, etc. Life throws us challenges and curveballs, and we all have to deal with them. If your worst curveball at the moment is twitching, thank your lucky stars.

5) You're not alone. You may feel like it sometimes, but you're not. As much as I said the internet can be harmful, it's a blessing in this regard. There are countless individuals out there who are twitching like crazy, and there are plenty of others who deal with unexplained medical symptoms.

6) Be healthy. This seems obvious and simple, but not many follow it. If you're hungry and you don't feel like vegetables and fruit can satisfy you, that's not hunger; it's a craving. Eat whole fruits and vegetables, lean meats and whole grains. Drink more water, dammit. Do your best to eliminate white flour, sugar and artificial sweeteners from your diet. Exercise. Food can be either the best, most trusted medicine in the history of mankind, or the slowest, most insidious poison to your body. The food you choose to eat determines if it's the former or the latter. Healthy food is good food, and you'll enjoy it more when it doesn't come with some weird guilt. Let yourself indulge every now and then, and you won't feel guilty if it's an exception. Find that balance between being healthy and enjoying life. Drink a smoothie for breakfast every day during the week, but on the weekend, have a beer in the shower. It's all good.

7) Embrace your non-diagnosed status. Some of the old timers might remember my story, but I had cancer when I was a little kid. In some weird way, that was easier to deal with than my ambiguous neurological problems. Because the doctors were able to say "here's why you're sick. Here's what we're going to do to help you. If everything goes well, you will be cured within a year." I would LOVE to hear those words from a doctor these days, but it ain't happening. Nonetheless, BFS is preferable to cancer in every possible way. That goes without saying. Still, the total unknown is hard to deal with. But an EMG tech once told me that it's the obvious cases that are usually in trouble. The people who have the doctors scratching their heads for years are usually in much better shape. Be happy if you don't have a diagnosis-- there are plenty of people who have a firm diagnosis that would do anything to trade places with you.

8. Don't be anxious. Man that's easy to say, but it's hard to do. But having no diagnosis means what you have is unknown. And when something is unknown, that void can be filled with hypotheticals. And worst-case hypotheticals can be scary stuff. Don't do that to yourself. Don't assume the worst. Don't keep participating in behaviors that feed your anxiety. Try to regain control of your mind, and tell yourself to get a grip. Seriously, man up. Or woman-up for that matter (sounds weird cuz it's not a normal expression, but women know they can be strong as all hell.)

9) Accept the truth that statistics are on your side, but nothing is 100%. Hey, person who's reading this. You don't have ALS. It's a rare disease. Are you under 55? Then it's ever rarer. Is your main problem twitching, and not clinical weakness? Then it's even rarer. Have you had a clean EMG? Oh man, you're in really good shape. The chances that you have a rare presentation of a rare disease and you're part of a rare demographic for this rare disease, the chances that you have it are really, really, really small. But know this-- if you search for exceptions, you will find them. This world is huge and the internet gives us access to all sorts of things we wouldn't have known about before. You can find cases that contradict the accepted knowledge about ALS. Don't let those exceptions mess with your mind. There's a chance that I could be wrong when I said you don't have ALS. But if there's a 99.9% chance that you don't have it, and a .1% chance that you do, why the hell are you focusing on the .1%? I'm willing to take those odds. Please you guys, be rational.

10) Live your life. And don't just live it, live the #$%[email protected] out of it. Five years ago, I was in a long-term relationship where we fought all the time, and a big part of that was because I was anxious and worried about my medical problems. I was a wreck. My girlfriend got sick of it. I got sick of her getting sick of it. We broke up, I decided to change my tune, and I started living the best friggin life I could. I took a long look at the things that made me happy, and I started doing those things as much as I could. Whenever someone asked me to go out, or there was an event that came up, I always said 'yes', no matter how tired I was. I started going to live music all the time, I hung out with friends I hadn't seen in ages, I would go for long road trips with no destination in mind, I released an album that I had been working on for years, I started taking more classes, I volunteered to help kids with their reading, I met the most beautiful woman in the world, went on crazy vacations to places like the Virgin Islands and Gettysburg, Pennsylvania, and then we got super married. During this time, did I stop twitching? Nope. Did I start noticing the twitches less? You bet. And it made me look back at the times where I obsessed over the twitching and shake my head at the way I was living my life.

Even though I talked about eating healthy, allow yourself to eat amazing butter soaked lobster on occasion. Drink a bottle of rum on the beach every now and then. Volunteer for things you care about. Take a class in something you've always wanted to learn. Book a flight to somewhere you've always wanted to go. Fill a thermos with a few glasses of wine and go for a walk with a friend. Go to a sports bar and take shots while rooting for your team. Listen to great music. Surround yourself with the people you love. Don't contribute to the negativity in the world, and try to cut back on things that are increasing the negativity in your life. No matter what your health situation is, these are things you won't regret. Searching the internet for elusive answers and spending weeks at a time feeding anxiety is something you will. That goes for people with BFS and ALS alike.

I don't want to pretend that the picture is all rosy. My life has gotten so much better in the past five years, but my health has continued to decline. Like I said before, it's not BFS and it's not ALS, it's [email protected]#$%-knows disease, and it does affect my life. I'm not going to pretend that I don't still get anxious when new symptoms show up, or that I don't get down when things are particularly bad. But that doesn't change a single piece of advice I've outlined above.

Was this annoyingly didactic? Probably. Did I sound like those jackass life coach self helpers? I hope not (but again, probably.) I'm pretty much regurgitating what other people told me, but ultimately, the lessons sunk in and I'm glad they did. I hope that was slightly helpful to at least one person. Sometimes I have trouble getting myself to stop typing so I'm just gonna stop now.

Re: Check in/Top 10 pieces of advice from a twitching veteran

PostPosted: June 22nd, 2012, 1:16 pm
by Yuliasir
Grreat story Andy! Thanks for sharing it

Re: Check in/Top 10 pieces of advice from a twitching veteran

PostPosted: June 22nd, 2012, 2:29 pm
by mwagner
Wow, Andy - that was beautifully written and some of the best advice I have seen on this board. You really struck a chord (in a good way) with me. Thank you so much for taking the time to write that.

Mitra

Re: Check in/Top 10 pieces of advice from a twitching veteran

PostPosted: June 23rd, 2012, 3:24 am
by Mike101
like this post, very nice! thank you for sharing!

Re: Check in/Top 10 pieces of advice from a twitching veteran

PostPosted: June 23rd, 2012, 9:51 am
by ImOK
Good for you Andy - happiness is the best defense against most of what is wrong in life, huh? It was good of you to write your story so newbies can envision a way to not only cope but appreciate life as it is - twitches, cramps, or whatever. Glad to see you've moved on and are living well.
I'm also doing much better. :)

Re: Check in/Top 10 pieces of advice from a twitching veteran

PostPosted: June 23rd, 2012, 10:11 am
by dARR
Love this post. Perfect advice not only for newbies, not only for twitchers, but for pretty much everyone...
Made my day.

Re: Check in/Top 10 pieces of advice from a twitching veteran

PostPosted: June 24th, 2012, 10:26 am
by Ghayes420
Thank you VERY VREY much for sharing your experince and journey. This post made my morning. Thank you very much!