MY SAVING GRACE

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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MY SAVING GRACE

Postby thedeu on May 7th, 2013, 7:38 am

MY SAVING GRACE: A quote from The Adams and Victor's Principles of Neurology; "A simple clinical rule is that fasciculations in relaxed muscle are never indicative of motor system disease unless there is an associated weakness, atrophy or reflex change." Great story behind it, so here is the link: http://www.asktheneurologist.com/scared-its-ALS.html.

I'm going on month 7 of:
- Muscle Twitching everywhere (including the face)
- Calves feel like popcorn popping underneath the skin all the time
- Nerves/reflexes feel hyper-excited
- General body fatigue/malaise
- Vertigo/Lightheadedness
- Unilateral extremity numbness/tingling

As a new member I have to agree, this website has been a blessing in my life. Initially my symptoms started with fasciculations in my left thumb, which have progressed to everywhere and anywhere...no portion of my body is immune to it. I've had a few neuro consultations, 2 ct's of the head, 1 mri of the brain, 1 mri of the neck, 1 emg of the left arm (where I was experiencing numbness and tingling), and a slew of lab work. Everything has come back either negative or normal, with the exception of the neck mri, where it was discovered I have a c3-c4 disc bulge.

Suffice to say, this whole experience has absolutely turned my world upside down...but then I decided to gain control of it. I have worked as a medic for nearly 20 years, and I'm now a licensed funeral director. Great career choices, but they have proven to be somewhat detrimental to my psyche when I started to experience these symptoms. To make matters worse, I assisted the family of a former co-worker (from my medic days) who had been diagnosed with ALS, with his funeral arrangements as they knew I had shifted career gears and became a funeral director. When my muscle twitching started, the first thing I thought of was his battle with ALS, and my mind became fixated on it ever since.

Through tireless research of the subject of ALS, I was not only convinced I had it, but as I read the list of symptoms, my mind really started to play havoc with me: is my leg starting to atrophy? Am I having a hard time pronouncing the letter "s"? Are my secretions thickening? Is my breathing becoming labored? Is my left foot becoming sluggish? Etc. In hind sight its almost comical from the outside perspective, as I was once upon a time, one of those people who would laugh at hypochondriacs!

Now here I am, feeling as if I'm facing death. God bless my wife, who is a RN, for putting up with all of my drama. She has been relentless is assuring me that this is nothing terminal, but for whatever reason, I became stuck on this idea that I was going to die a horrible death. On top of it all, I'm a new father. We had our first child last may, and we have a new baby on the way. It scared me to death to think that I wasn't to be around for my children, and my wife would have to raise them on her own.

Flash forward to today and yeah I still have the muscle twitching every single day. Does it freak me out when some new area such as my face, sides of my hands, or elsewhere start to twitch? Hell yes it does! But am I as scared as I once was? No. Once I came across this support forum, and began learning that there is sooooooo much more out there from a neurological perspective in regards to what WE experience, my mind has been set a bit more at ease. I don't know when this journey will end and when my body will correct itself and things will resume back to normal. Maybe this is the new normal and this is just something I'm going to have to deal with. But as long as I know this isn't terminal, this isn't death staring at me, this isn't how my life ends...at the end of the day I'm fine. I thank God everyday for my wife, my child(ren), and the ability to walk, talk, go to the gym, and simply function.
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Re: MY SAVING GRACE

Postby SecretAgentMan on May 7th, 2013, 8:00 am

Your story sounds similar to mine in that I was a new father when all of this started for me too. Don't rule the stress of expecting a new child out as a major contributor either. I remember when I had my first panic attack we were in Baby's R Us registering for baby shower items and suddenly I felt overwhelmed with anxiety for this major change that was about to take place in my life. I knew everything would change. Being there in the store registering for items just made it all so real and I had to go to the glider rocker section and sit down. I was under a lot of stress at that time with me being out of a job and my wife being the primary bread winner at the time, I felt even worse. Our emotions and our thoughts are very much tied to our physical health and BFS is good reminder of that.

Having gone through the trauma of helping take care of your friend made a real impact on you and that is OK. You don't need to carry his burden though. You've already seen the validation that your symptoms ease when your stress levels do. You're on the right path. Thank you for sharing and welcome to the forum.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: MY SAVING GRACE

Postby thedeu on May 7th, 2013, 1:27 pm

SecretAgentMan wrote:Your story sounds similar to mine in that I was a new father when all of this started for me too. Don't rule the stress of expecting a new child out as a major contributor either. I remember when I had my first panic attack we were in Baby's R Us registering for baby shower items and suddenly I felt overwhelmed with anxiety for this major change that was about to take place in my life. I knew everything would change. Being there in the store registering for items just made it all so real and I had to go to the glider rocker section and sit down. I was under a lot of stress at that time with me being out of a job and my wife being the primary bread winner at the time, I felt even worse. Our emotions and our thoughts are very much tied to our physical health and BFS is good reminder of that.

Having gone through the trauma of helping take care of your friend made a real impact on you and that is OK. You don't need to carry his burden though. You've already seen the validation that your symptoms ease when your stress levels do. You're on the right path. Thank you for sharing and welcome to the forum.



SecretAgentMan:

Duuuuuuude that's crazy! I had the same experience in Babie R Us as well....total panic attack, had to get out of there. I was really overwhelmed with this life changing experience. Nonetheless, I composed myself, got it together and put myself in check. Funny that you mention stress, because the vertigo/lightheadedness, the unilateral extremity numbness and tingling all started about a year ago, right before my son was born. 6 months later the fasciculations started and haven't stopped. They are not nearly as severe or frequent as in the beginning, and I attribute that to diet, exercise, and vitamin supplement *beep*. If much of this is psychosomatic, or stress related, the power of the mind never ceases to amaze me. Thanks for the words of encouragement!
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Re: MY SAVING GRACE

Postby SecretAgentMan on May 7th, 2013, 6:29 pm

Wow! That sent chills down my spine! We might need to petition to get a special father's relaxation room with brown paper bags for them to breath into for such occasions. :)

It definitely sounds like you are on the right path though. Diet, exercise, and stress management are all very important cornerstones to eliminating or reducing the symptoms.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: MY SAVING GRACE

Postby thedeu on May 8th, 2013, 1:21 pm

SecretAgentMan wrote:Wow! That sent chills down my spine! We might need to petition to get a special father's relaxation room with brown paper bags for them to breath into for such occasions. :)

It definitely sounds like you are on the right path though. Diet, exercise, and stress management are all very important cornerstones to eliminating or reducing the symptoms.


I couldn't agree with you more!
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Re: MY SAVING GRACE

Postby dARR on May 10th, 2013, 11:53 am

Great post... I enjoyed reading your story.
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: MY SAVING GRACE

Postby TwitchyMark on May 16th, 2013, 4:22 pm

No baby for me but you are my doppelgänger otherwise, thedeu. I used to service medical equipment and crossed paths with a woman well into ALS. Before I left, she whispered her thanks and began to cry and ask me why, why she had to suffer so badly. It really affected me. Personally, my scariest and first symptom was dysphagia, but that has also waxed and waned. Not being able to swallow is bad enough without twitching and all the other things that kept popping up. Never in all my life did I have any problem eating. But I soon found myself drinking Ensure to keep on weight. Effective diet, but not ideal to say the least. I kept away from reading anything about ALS which was a good and bad thing. It insulated me from a lot of the fear, but also kept me from learning why my symptoms didn't match the disease. And my docs weren't forthcoming with info either. I needed someone give me my saving grace... to say "I know what you are scared of... ALS... Well, your symptoms don't point to that and here is why....". I still don't have a diagnosis, but the vast majority of my fear is gone.

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Re: MY SAVING GRACE

Postby thedeu on May 18th, 2013, 4:06 pm

TwitchyMark wrote:No baby for me but you are my doppelgänger otherwise, thedeu. I used to service medical equipment and crossed paths with a woman well into ALS. Before I left, she whispered her thanks and began to cry and ask me why, why she had to suffer so badly. It really affected me. Personally, my scariest and first symptom was dysphagia, but that has also waxed and waned. Not being able to swallow is bad enough without twitching and all the other things that kept popping up. Never in all my life did I have any problem eating. But I soon found myself drinking Ensure to keep on weight. Effective diet, but not ideal to say the least. I kept away from reading anything about ALS which was a good and bad thing. It insulated me from a lot of the fear, but also kept me from learning why my symptoms didn't match the disease. And my docs weren't forthcoming with info either. I needed someone give me my saving grace... to say "I know what you are scared of... ALS... Well, your symptoms don't point to that and here is why....". I still don't have a diagnosis, but the vast majority of my fear is gone.

Mark



Hey Mark,

Yeah dysphagia would have prob driven me over the edge! Glad to hear, however, that your symptoms have lightened up. Fear more than anything is the main culprit, and in my opinion, the chief contributing factor in regards to the psychosomatic chain of events. At its roots, it really boils down to getting a hold of yourself, and convincing yourself that you are not dying. I read a post on here from some that made me chuckle, and it was pertaining to "can I die from BFS?" One answer was: "My grandfather had bfs and died....when he was 89!" Or something to that effect! So here we are, supporting each other and hopefully with time, our symptoms lessen or become more manageable. Thanks for sharing your story!
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