My story (new member)

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My story (new member)

Postby wakefield on August 14th, 2003, 6:25 pm

I've been lurking on this board for a while now, and figured I would share my story with everyone.

It all started around three months ago when I had some intense twitching in my right eye. As I am prone to do (aren't we all), I researched the topic and concluded this must be due to stress/sleep issues. The problem subsided, but a week later I awoke in the middle of the night with my right index finger twitching back in forth. I thought, "no big deal", and went back to sleep. Of course, I researched the topic, and what do you think I found. I woke two days later and felt a numb spot on my face. After going to the Emergency Room and having a CT scan and blood work, they said, "You need to see a neurologist".

Well, I got an appointment with a Neuro. He noticed the visible tremors in my hands. After having a normal exam, he asked, "Do you have any muscle twitches?" I told him that I had had a few, but nothing substantial. He told me that the twitches were an indicator of ALS.

Well, I'm sure you know what happened next:
Twitches from head to toe.
Deep depression for weeks where all I concentrated on was my mortality, and I lost interest in almost everything.
Hundreds of hours of research on ALS.
Strange symptoms that turned out to be transient (i.e. difficulty swallowing, burning sensations in palms and down arms and legs, difficulty raising arms, etc.)
Tons of medical tests (EEG, EKG, Echo, MRI, LFT's, Liver Sonogram, Lots of Bloodwork, and an EMG that was completely normal on my upper extremities)

This should make me feel better, right? Well, no. In fact, after receiving a diagnosis of "benign tremors" (whatever that is), from my Neuro, I have seen a specialist at a teaching hospital. After the specialist gave me a normal exam (he opined that it was stress/exhaustion), I have been experiencing constant twitching in my left foot for the past two weeks along with a weak feeling in my left leg (which I did not experience pre-fasciculations). My GP has started me on Lexapro, which has helped my mood, but not alleviated my twitching.

So, here I am just like the rest of you, wondering about my fate instead of going ahead and living life. I wonder if my symptoms are entirely pshychosomatic, or if I have a real disorder with only a few psychosomatic symptoms. Also, it seems like every time I read something comforting about the progression of ALS, and how my situation is completely different, I will also read the exact opposite information from another source.

Anyway, thanks for reading, and thanks for posting on this board. This is a haven for information and optimism. I appreciate any replies.

Chris
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Postby SusanSid on August 14th, 2003, 6:38 pm

Chris,
Thanks for joining and sharing. My advice for you is to stay on this board and avoid the others. Not that they are bad, but you get a lot of bad and misinformation on the other medical boards and people here are for the most part well read on BFS, supportive and understand your worry. It has happened to us all.
I have had twitches for 21 months and I still get a little worried when I see my big toe moving ever so slightly from fasciculations. When we discover we twitch we are hyper sensitive to every body sensation...and I think I've had every symptom mentioned on this board. I do believe that the mind is very powerful and it can make a twitcher twitch a lot more!
Believe your doctor, and stop reseaching ALS, it will literally make you nuts.
Keep in touch with all of us!
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Postby Jenn311 on August 14th, 2003, 8:53 pm

Howdy Chris,

Welcome to BFS Haven :wink: . Bizarre neurological symptoms are almost a hallmark of BFS rather than the exception. I remeber when I first came down with it back in '98 one of the first really weird symptoms I noticed, after the all-over body tingling but before the twitches was a big patch of numb skin on my back. I had almost forgotten about that before reading your post....I asked my GP about it and she blew it off.

Thanks for sharing your story. Take Sue's advice and stay away from ALS sites. I never go there, for my own sanity....I would be in the nut house now if I did. Except that what you have is benign and you will soon become at peace with it.

Glad to have you with us.

Jen :D
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Your doctor told you ALS indicator

Postby KERRI on August 15th, 2003, 7:06 am

So if your doctor told you they were an ALS indicator than did they do emgs and all that great stuff. I told my doctors about the ALS thing, I am a 29 year old female and they looked at me like I was nuts. If they are such an als indicator why have I met so many people at work who twitch and do not even care. I thought weekness and twitches along with cramps were als indicators. I have not gone to one doctor yet who thinks anything of twitches and one that I went to twitches himself.

So, How did your doctor come to the conclusion that it is bfs.

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welcome...

Postby Renae on August 15th, 2003, 7:13 am

Welcome! I'm glad you found the site...it has provided a lot of comfort for many of us and I hope it will do the same for you! I agree with Susan and Jenn about staying away from many of the other sites. It will just cause you additional anxiety that I'm sure you don't need!

Take care!
Renae :)
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Postby PamT on August 15th, 2003, 7:47 am

Boy, I have an appt. with a neurologist today, and I sure hope he has better bedside manners than your did!!
You don't just tell somebody that without any explanation or reason why...
some doctor's are just incredible.

Anyway, I think that you are fine, especially after all the tests you've gone through. If you look through this site, you'll find many people that seem to twitch everywhere and constantly.

Everyone twitches in their eyes.. that's probably more stress than anything else...
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Postby wakefield on August 15th, 2003, 1:45 pm

Thanks for the encouragement and the replies everybody.

My neuro mentioned twitching and ALS on my first visit, which naturally freaked me out. He didn't mention that twitching alone was ALS, but he said that it was a symptom (which we all know). I wasn't even twitching much before that visit, but that really set it off. After seeing my neuro about 3 more times, and having normal neuro exams/strength exams and lab tests, he determined that it must be "benign tremors", which I take to mean BFS. "Benign" is the key concern.

By the way Kerri, I'm 28 years old, and they think I'm nuts when I express fears about ALS also.

Chris
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Postby DanielDK on August 17th, 2003, 8:45 am

Hi Newbie!

Good to have you with us!

As all the other great individuals posted before me - relax, become familiar with your own body, remeber that it´s benign, and just live your life like always!

Allow me to repeat a comparison that´s been made earlier - wouldn´t you rather have a few twitches and tremors, than migraine, diabetes, rheumatism or chronic back pain?

All people in this world have got SOMETHING, some little disturbance of their everyday, but as the good ol´saying "life goes on" - it really does!
Except - you´re one of the lucky ones, cause you twitch, meaning that you just got your family expanded with about 500 members from this site :)

So basically dont worry...no need too even worry or give Dr. Kevorkian a call!

Best of everything,

Daniel
Last edited by DanielDK on August 21st, 2003, 1:13 pm, edited 1 time in total.
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Postby Jenn311 on August 17th, 2003, 9:06 am

Excellent post, Danny-boy. So true, so true....
Jen
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Postby wakefield on August 17th, 2003, 10:23 pm

Thanks, everyone for the kind words. Daniel, I appreciate the words of encouragement. It can be easy to lose sight of life when focused on every twitch of your body. I'm happy I found this website full of supportive people.

Chris
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Heh heh

Postby Flash19 on August 18th, 2003, 11:35 am

OK the good news is that you definately have BFS - here's why:

All the symptoms you have listed are classic BFS. Difficulty in raising your arms. Yup had that! Usually discover this when trying to tie my bandana, comb my hair, shave, hang a picture, drive the car. Sometimes drive the car alternating between arms. Screwdrivers are not my friend anymore:(

One leg feeling weak. Mmm hmm, that's normal too. In my case it's my right calf, something that makes no sense since I am right legged. It doesn't like it when I squat down to put money in the safe any more. Thing is it's not really weak since I can walk on tip toe for miles - not recommended as this just makes it more painful.

Difficulty swallowing. This rings a bell from way back. Went on for about a month. Mind you for some people this afflication might be a blessing :) Thing is, if you had ALS then you wouldn't have the swallowing thing and the weak leg at the same time. It starts in one place and spreads. What you have is BFS and fear of ALS. It's the fear of ALS that's subconciously making you clenchg your throat.

Here's how to prove to yourself that those sort of symtoms are *beep*. A nice little experiment... The main symptom of ALS is that your ears stop producing wax. Not many people know this. Now try and discern whether this is happening to your ears - however the rule is that you aren't allowed to use cotton buds/Q tips OK? So how do you tell? Well do your ears feel dry inside if you just concentrate on them? Worry about this for 5 mins or so until you have to visit the toilet and download. Remember - NO EAR BUDS.

Oh dear.

Haaaa! I lied about the wax thing. Sorry if I scared you:) Point is that almost any symtom can be created from fear of ALS.

Avoid alcohol and caffiene for a while. Get a good nights sleep at regular hours, eat a nice healthy diet. Rest assured that you have BFS (because trust me you do), and the twitching will improve to the point it pretty much stops.

Hope this helped.


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Postby dwl on August 18th, 2003, 11:42 am

Good post, Flash.

BFS is definitely made worse by stress/anxiety/sleep problems etc but I don't think they are the root cause of it. It is thought to be an autoimmune problem, so no matter how laid-back you are you will probably still twitch!

David
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sypmtoms

Postby dlog on August 19th, 2003, 6:00 am

Just found your website. My husband started having twitching over his whole body 2 months ago. He is having cramps in his right calf muscle and says his arms fell "heavy" periodically. He is not dropping anything and still feels he has strength in them. Not sleeping well at night due to fears and concerns. It took over a month to get into the neurologist, and of course the diagnosis of ALS was mentioned as a possibility. He has his MRI tonight but it will be another 3 weeks until they could get him in for his EMG. Last night he said his arm felt tinglely. This is a new symptom. I was very gald to read through some of these posts to see arm weakness that comes and goes- that made him even more concerned about ALS since muscle weakness is a mentioned symptom. Anyway, just trying to read up and I guess get some encouragement for both of us as we wait around for more tests to give us an indication of what we are dealing with and also a better understanding of the various diseases. The wait is terrible!
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Weakness

Postby Flash19 on August 19th, 2003, 6:14 am

What your husband will find is that he lacks muscle stamina as opposed to outright strength. Also this stamina problem will come and go in various muscles from time to time. Strength is measured by how much weight can you lift as a one off action. Stamina is more about repeating a motion frequently. So I have trouble and discomfort holding my hands up to the steering wheel for a few minutes at a time, yet I can still bench press 200lbs...

Now don't let him go nuts lifting weights etc. ALS usually starts in the hands and feet, and it's onset is usually rapid - like faster than you'd believe. If he can do a one off compression squeeze on some hand exercisers spring things, and walk across the room on tiptoes then back on his heels it's very unlikely to be ALS - not after 2 months. Just don't go repeating these exercises every 5 mins or he will get sore muscles!!!

Like I said I have trouble holding a screwdriver because the turning action tires out my hand. My hands aren't weak they just get tired quickly. They feel weak, but all the strength is still there. Even typing this my fingers are feeling ugh :(

There are some suppliments that you can get from bodybuilding shops that may help;

creatine monohydrate
methoxy... something or other helps with stamina


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Postby Jenn311 on August 19th, 2003, 7:09 am

Hey Dlog...

Sorry to hear about your hubby. My neuro told me that if you can feel your twitches it is almost certainly BFS. I agree with Mr. Flash that muscle tiredness is very common in BFS...not sure why, but if there are any scientists out there reading this maybe you can research it? :D . We are all guilty of strength testing....I used to obsessively do it, and I bet your hubby will for a while. In fact wait until he obsesses on if he is having trouble swallowing or slurring his speech....that's a fun one! ALS isn't as much muscle fatigue as it is loss of function. If he can still do everything he once could, he is most likely fine. However, it's not ever having paid much attention to what you could do before as opposed to now that will drive you crazy with anxiety.

He is lucky to have such a sweet supportive spouse.
Jen
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