Still Alive!!

BFS Online Support Group

Moderators: JohnV, Arron, garym

Still Alive!!

Postby Mark S on October 4th, 2009, 11:49 pm

Guys I occasionally pop in here to see what's up though I must confess that for several years I lived to read the posts here, learn, and find comfort & reassurance.

My twitching nearly killed me - not from any disease but from the mental torment I inflicted on myself.

The twitching started in March 4.5 years ago. I never did find the answer as to what caused it - lexapro, a virus, stress??? It never stopped particularly in my calves which look like a bag of worms 24-7. That said, I would say they seem to have lessened elsewhere.

I seem to be nowhere near dead. I am 44, train intensively 5 days per week and can physically do things that only atheletes can.

I won't repeat all of the wisdom you will find on this board regarding the physical characteristics of this disease.

My advice:

1. Muscles twitch - apparently they can even twitch violently for four years but allow their owner to complete 60 minute of plyometrics. So twitching (and yes my tongue twitches) by itself is not the marker for fatal disease.

2. Listen to your dr. If only in the third month of this I could have believed it when my gp dx'd "benign fasciculations with parathesis". Looks like he was right as was the neuro and other physicians I've seen.

3. Escape the trap - don't let yourself obsess and spiral out of control. Ban self-testing, reading any site but this, and looking at your body. It is very easy to have this quickly spiral out of control. I was there and near suicidal over the engulfing fear I created - not from facts but from my irrational beliefs.

4. If you are obsessing see someone about it quickly - you can fall very fast into a mental nightmare that can steal your time and energy.

5. Present moment - this very second my calves are popping away but my energy is here with you. Stay present. Are you with your friend or family? Then be with them. That's what is best. Don't be like me and waste two years and hundreds of hours reading about diseases that if you had it wouldn't matter anyway. But you don't have ALS.

6. You may have periodic relapses of worry - come back here, stay present, etc. They usually come with stress and pass faster as time goes on.

That's it. Please feel free to pm me. Chris Basso I very quickly came across posts from you - it's nice you are all continuing to help.

Be well everyone,

Mark
Mark S
Saint
Saint
 
Posts: 991
Joined: May 15th, 2005, 11:36 am
Location: Cincinnati, OH

Re: Still Alive!!

Postby basso on October 5th, 2009, 7:05 am

Amazing post from an amazing man. Wonderful to hear from you. After all is said and done, this is what happens to twitchers...they discover they are well. :D

Basso
basso
Saint
Saint
 
Posts: 2359
Joined: April 28th, 2005, 7:17 pm

Re: Still Alive!!

Postby Keith R on October 5th, 2009, 8:45 am

Awesome Mark!
Its really great to hear. reading your old posts- our presentations are very similar.
I am not sure if mine was triggered by a virus or what, but at the eend of the day it doesnt matter- Here I am.

I had the same areas involved with the calves going nuts, etc. Freaked out, just like you did. I am getting much better.
I am decreasing my self testing, but I admittingly sometimes still have to.

For me, like you, I am a pretty active 38 year old guy. I find comfort in exercise. I went for my typical run yesterday, and did a nice fast 5 miles. No different than before the twitches. So I cant imagine that there is any real weakness here.

It is so great to know that you are 4.5 years in and still going strong.
These posts for me are the best. Hands down!

Thanks for checking in.

Keith
User avatar
Keith R
Member
Member
 
Posts: 43
Joined: September 14th, 2009, 9:51 am
Location: New York, NY

Re: Still Alive!!

Postby Mark S on October 5th, 2009, 10:18 am

Keith

definitely take comfort in exercising - particularly when you are using muscles that regularly twitch and are even getting stronger. Logically, if you have mnd, your muscles are not improving in function but rather would be weakening. A great way to know this is to keep an exercise journal. If your squat max improves 50lbs or at all I can name several diseases you couldn't have.
Mark S
Saint
Saint
 
Posts: 991
Joined: May 15th, 2005, 11:36 am
Location: Cincinnati, OH

Re: Still Alive!!

Postby jro on October 5th, 2009, 2:45 pm

Mark,

Great post and very much appreciated. My saga started bodywide and included tongue twitches which I still get. The tongue thing is one of the harder things for me not to worry about. Can you please tell me if you feel or have felt your tongue twitches? I just feel mine (like a little pulse, buzz, flicker, and sometimes a quick shock). I get them practically daily but only a few times a day. This started out of the blue right along with the calves and everything else.

The tongue thing is also a big sticking point for lots of people on this board so your long history of vibrant health despite a tongue thing will help many now and in the future.

jro
User avatar
jro
Saint
Saint
 
Posts: 1594
Joined: August 11th, 2008, 2:20 pm
Location: Southern Çalifornia

Re: Still Alive!!

Postby Barbie800 on October 5th, 2009, 3:18 pm

What an awesome post! I'm 6 months into this and finally starting to get over the big fears. Thanks so much for posting!!!
Barbie800
Saint
Saint
 
Posts: 1169
Joined: April 22nd, 2009, 2:39 pm
Location: Pennsylvania, USA

Re: Still Alive!!

Postby Mark S on October 5th, 2009, 10:08 pm

jro,

The tongue twitches are tough to deal with particularly because the information available on the internet often leads you to a malign conclusion. My tongue started twitching in early April - just a few weeks after the twitching began. I remember it like yesterday. I had been reading about tongue twitches on some als sight and decided to stare at my tongue - I *saw* it twitch. I went off the charts insane crazy - I was sure I was a dead man. I had to take two xanax and a sleeping pill just to get a couple hours of rest each night. I'd awake in a flop sweat panic...it was horrible...really horrible.

My tongue still twitches and just yesterday I felt one at the tip of my tongue (not making it up for your benefit - as God is my witness) - it's almost like a small electric shock. When they started, however, it was as if I had pop rocks in my mouth...most likely in those early days my tongue was a bag of worms but I was too afraid to stare at it much after the first encounter. I did think that one side of my tongue was smaller and also that my pallet didn't open as wide on one side - it turns out both of those are true but I guess that's the way I always was because obviously if I had bulbar onset als I'd for sure be dead now.

So your tongue can twitch and does in this syndrome - it' not a holy muscle. It's definitely susceptible to twitching and your description matches what I've felt - AND seen.

To list some other strange things I've had - palatal myoclonus (this has gone away though I probably jinxed myself) - this is when the back of your throat makes a rhythmic clicking sound. My neurologist thought this was strange and he said "oh that's nothing I get that". Interestingly if you have this and it stops at any point it means it's benign. If it never stops it indicates some lesion in a particular segment of the brain and is not benign.

My genitals have twitched.

My butt.

My inner ear.

My face, chin, eyelid, neck, chest, stomach (once in one spot for 30+ days), back, legs, hands - stop it - every muscle in my body that voluntarily can be moved and probably those that cannot have twitched.

I've had areas that felt hot; my foot felt wet for a day, buzzing, tingling, an electric shock down my leg when I bent my neck forward (very early into it and passed quickly) known as Lhermitte's Sign.

Cramping in my feet and calves. And on and on and on...

I remember a neurologist telling me that nothing known causes all of these symptoms - I believe him. When I research it I'm as confused and perplexed as he was. Nevertheless, it is all true. Clearly, I had some neurological meltdown which I believe was caused by either Lexapro or a virus...but who knows? In the end, I am alive and still twitching. The stranger symptoms have gone away for the most part.

There are a couple of take aways from this - you can have very clinically scary symptoms like tongue twitching or Lhermitte's Sign and be completely fine - that's one. And secondly, I just wish I could relive those two years where I couldn't think of anything other than als. It was all wasted time...wasted fear...just waste. Laying awake night after night planning my death, crying, wondering about how my family would cope, etc, etc. All for nothing. If only I would have believed my doctors. I remember the neurologist testing my reflexes and they were fine. He said, "if you had als and I did that (striking the knee) your leg would shoot out and kick me". My wife said something like "don't you see his calves twitching?" "Yes I see them...sometimes people just twitch." I was so stupid not to believe him. Perhaps though my pain will not be wasted because someone will read this and realize that they need to just trust their doctors and start living.

That's my message jro - just live. Don't wait for X months to pass or this or that - just be present right now. I know how hard that can be as much as anyone...but it's the course to take.

Basso once told me that my life was not about statistics or comparisons to other neurological cases but it was my unique experience. And that I should live it out. He was right.

Be well,

Mark
Mark S
Saint
Saint
 
Posts: 991
Joined: May 15th, 2005, 11:36 am
Location: Cincinnati, OH

Re: Still Alive!!

Postby jro on October 6th, 2009, 9:16 am

Mark,

Your reply was very gracious and very responsive to my concerns. We have clearly lived the same experience. I do try to live my life, which is best done for me right now by keeping so busy with things I like doing that I am too tired to do much worrying or researching. I still manage to get in an hour or so a day and many days much less but that is reasonable for me at this stage. Hopefully, my concern about it will lesson over time as it has for you.

jro
User avatar
jro
Saint
Saint
 
Posts: 1594
Joined: August 11th, 2008, 2:20 pm
Location: Southern Çalifornia

Re: Still Alive!!

Postby Melaniej on October 6th, 2009, 5:04 pm

I love reading these post!!! This was great.. Thanks so much for taking the time to write it!! You really help us newbies out!!!!!!!!!!!!! :)
User avatar
Melaniej
Member
Member
 
Posts: 34
Joined: August 18th, 2009, 2:58 pm
Location: Portsmouth, Virginia

Re: Still Alive!!

Postby Barbie800 on October 6th, 2009, 5:10 pm

Thanks for the great post. Some of it sounds so much like myself.
Barbie800
Saint
Saint
 
Posts: 1169
Joined: April 22nd, 2009, 2:39 pm
Location: Pennsylvania, USA

Re: Still Alive!!

Postby wanda on October 6th, 2009, 5:57 pm

Wow Mark....and jro - it amazes me how identical our stories are. Yes the worry was a waste of time for sure. I have started a regular exercise routine as well and it really helps to see yourself get stronger.

Thanks for taking the time to share with us :)
wanda
Member
Member
 
Posts: 28
Joined: August 27th, 2009, 7:55 am
Location: Newfoundland, Canada

Re: Still Alive!!

Postby Andy2804 on November 15th, 2009, 12:28 am

Hi,

I also posted here about 4-5 years ago. I twitched (and I still do sometimes) everywhere....tongue, arms,leggs, throat....just everywhere. I had cramps, muscle pain und I was scared to death. I was convinced that I have ALS, today I know that I DON'T HAVE ALS. I wasted years of my life. You need to break the cycle, trust your Doc and get over it. You don't need to wait a few years, you don't need 3 EMG's......

I hope this helps a little bit for some newbies, this website was my lifeline 5 years ago.

Andy
Andy2804
New Member
New Member
 
Posts: 7
Joined: October 2nd, 2005, 8:56 am

Re: Still Alive!!

Postby [email protected] on November 15th, 2009, 1:45 pm

Thanks, Mark for your positive insight on what you've experienced with BFS. I am curious about your comment on Lexapro perhaps being the cause. What makes you think so? I had been on lexapro for a couple of years then quit suddenly - didn't titrate down - and it was awful. I experienced electric shock type sensations for two weeks after stopping the lexapro. My bfs symptoms started 2 months later. Anyway, just wondering! Thanks again for your info - very helpful for us new to this!
Amy
[email protected]
Member
Member
 
Posts: 39
Joined: November 4th, 2009, 10:21 am
Location: Columbus, Ohio

Re: Still Alive!!

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: Bing [Bot] and 5 guests