Worried again.

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Worried again.

Postby Arkansan on June 14th, 2013, 8:50 pm

Does anyone else have this thing where it seems like most of your major muscles will tremor like they are almost fighting themselves in certain ranges of motion? My forearms do it when moving my wrists up and down, shoulders do it when shrugged, etc. I also have been having my right thumb twitch in the meaty part just under the actual thumb for about a week, it will also feel a little weak sometimes is this normal? I have been having pain in my neck some, though that could be many things.

I also get this weird vibrating feeling deep inside an area sometimes, almost feels hollow if that makes since. I also get deep aching pains in my hands and forearms sometimes that I am afraid are muscle cramps, but when I have people feel the area during an episode of this pain they actually say the muscles feel very relaxed. Somethings get better though, I went through a period of having lots of twitches in my lower legs with crawly type feelings in them though that has all but dissipated. Oh does anyone else get weird deep vibrating sensations in their hands.

Guys I am still terrified of ALS and it seems like the universe is rubbing it in my face here lately, within the last two to three weeks I heard a radio commercial for an ALS research center, had a local hospital call me back about a neuro referral I got like 8-9 months ago and tonight my wifes cousins significant other shows up wearing a t shirt for an ALS walk. Has this happened to anyone else when they were in the grips of ALS fear?

I still have random all over twitching, legs, hands, face, the odd tongue, though some days are better than other. A few months ago, maybe two I had what seemed like good days where I had almost no symptoms but now I am starting to think I imagined it.

I am seeing a psychologist for anxiety but it takes time. I can everyone in my family swears my symptoms flare when dealing with high stress and this latest round coincides with arrival of a cousin who ended up living on the couch, breaking the law and my household rules. Oh and my wife is pregnant, I got kicked out of school and am in the middle of a move. Also right now I am geared up because she is going on an 8 day trip with her family and it will be the longest we have been apart in almost 5 years.

I am terrified of ALS, but the other night I was able to practice martial arts, spar and grapple for 2 solid hours, I have also been doing a very low weight but high rep lifting program, surely that I can still manage that a year into all of this is a good sign right?

I have not called back about my neruo referral because I am so scared of what they might find that the though makes me sick to my stomach. Should I go? My PCP is not much help, and a highly respected internist I saw early on was almost amused by my fear of als.
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Re: Worried again.

Postby Mike Martin on June 15th, 2013, 12:19 am

A lot of other people here are in a better position to answer your questions on specific symptomatic stuff, but as far as your belief that a lot of this could be the product of stress and/or anxiety- you're absolutely right. And it sounds like you have plenty of both to go around right now. While I'm sure there's a name for the phenomena, I've found it's pretty common once I learn something new, or have something stuck in my head, I start to see it everywhere. Similar to you, I had some pretty bad anxiety about MS a few months back. As if the world was conspiring to send me a message, I started seeing those "MS Kills Connections" commercials on TV, ads for the National MS Society fundraisers, and Annette Funicello lost her battle with the disease when I was at my worst. The reality is that all these things were showing up around you before, but you weren't so hyper-aware to notice them. I've found the universe isn't subtle. If it wants you to know something, it's going to smack you in the mouth with it.
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Re: Worried again.

Postby Yuliasir on June 15th, 2013, 2:01 am

It is sometimes funny for me how ALS really surrounds a person frightened of it. When I was on my worse time, I've seen it everywhere - even in my blog feed, where I got a story of our Russian singer died from it in quite a young age (about 50). it was really ubiquitous, and each and every day remainded me my fears.
last time it was on this new year period when we were watching TED, but i knew that finally one of the persons dies from ALS only because I have read the plot in Wilipedia (I hate to watch the stories if i do not know the plot), because in Russian translation it was said that the evil guy got his penis shrinked and therefore died from depression (I do not joke at all about quality of movie translations here and anyway nobody here knows much about ALS). It is mostly Western world in which the knowledge about it is spreaded in order to raise funds etc. We here (in general public) do not know even that Down syndrome does not always mean complete mental and social disablility, what's to say about ALS!
So you are a bit of victim of that concern raising campain, do not worry so much about it. it is not designed to torment you specifically.
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Re: Worried again.

Postby Spider on June 15th, 2013, 2:05 am

Hi

You have BFS ,nothing else ,nothing nasty .i am going through the same .

I wake up and it feels I have run a marathon .
Twitc 24/7 for the time being ,put getting stressed about it makes it worse sadly.

You have been wrestling for 2 hours .

Nobody with ##s could do anything ,never mind wrestle.

Read the sticky post on this forum they are great and offer good advice.

All the best

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Re: Worried again.

Postby RGB on June 16th, 2013, 11:19 am

Arkansan wrote: and a highly respected internist I saw early on was almost amused by my fear of als.


You say this like it is a bad thing? :)

Everything you describe sounds benign, you have a lot of stress in your life (outside of the ALS fear) and the medical experts are unconcerned. The only challenge you face is being able to see this for what it is.... health anxiety. That won't be easy, but unlike having a degenerative disease, it is perfectly possible to beat.

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My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Worried again.

Postby Aingealag on June 17th, 2013, 12:34 am

I have had most of the symptoms you describe... and I'm fine.

Re-read the sticky topics about why you don't have ALS. Or even better; imagine that one of us or one of your friends was saying what you say... What would you say to him/her? All of a sudden the situation looks different, doesn't it? ;)
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Re: Worried again.

Postby johnnythejet on June 17th, 2013, 9:01 am

Arkansan wrote:Does anyone else have this thing where it seems like most of your major muscles will tremor like they are almost fighting themselves in certain ranges of motion? My forearms do it when moving my wrists up and down, shoulders do it when shrugged, etc. I also have been having my right thumb twitch in the meaty part just under the actual thumb for about a week, it will also feel a little weak sometimes is this normal? I have been having pain in my neck some, though that could be many things.

I also get this weird vibrating feeling deep inside an area sometimes, almost feels hollow if that makes since. I also get deep aching pains in my hands and forearms sometimes that I am afraid are muscle cramps, but when I have people feel the area during an episode of this pain they actually say the muscles feel very relaxed. Somethings get better though, I went through a period of having lots of twitches in my lower legs with crawly type feelings in them though that has all but dissipated. Oh does anyone else get weird deep vibrating sensations in their hands.

Guys I am still terrified of ALS and it seems like the universe is rubbing it in my face here lately, within the last two to three weeks I heard a radio commercial for an ALS research center, had a local hospital call me back about a neuro referral I got like 8-9 months ago and tonight my wifes cousins significant other shows up wearing a t shirt for an ALS walk. Has this happened to anyone else when they were in the grips of ALS fear?

I still have random all over twitching, legs, hands, face, the odd tongue, though some days are better than other. A few months ago, maybe two I had what seemed like good days where I had almost no symptoms but now I am starting to think I imagined it.


I've been listening to twitcher's stories for more than 8 years and your story is BFS all the way. Not only with regard to symptoms, but the destructive thought processes and fears are right on par for an anxious twitcher. I can't even tell you how many of us have seen "signs" seemingly there to preface the impending doom of what was to come. Fortunately, the facts are constant. Our symptoms are caused by a source or sources that can never hurt us. You are fearing a disease that can not possibly be behind the symptom pattern you describe. The sooner you accept that, the quicker life will get back to normal.
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Re: Worried again.

Postby graberc on June 18th, 2013, 9:40 am

the constant reminders. . .

heh

1) my friends ex-husband got the disease
2) The Movie TED's bad guy got the disease
3) two radio coaches fired today, for making fun of a football player (younger than I am) with the disease
4) Beer event for the disease

I mean maybe its a good thing. The more visibility and understanding of the horrible disease, the more we might fund a cure
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Re: Worried again.

Postby SecretAgentMan on June 18th, 2013, 11:30 am

graberc wrote:The more visibility and understanding of the horrible disease, the more we might fund a cure


I believe that the disease is curable for those who understand it from a certain perspective. The issue is that the required perspective angle is so far removed from the perspective angle adopted by most of our society, culture, and the western medical paradigm. The gap between the two appears great because it takes people outside of their comfort zones of their current understanding of the way things work, doctors included. It is what it is though. People will open their minds to that which they are only willing to do. You cannot impose a perspective on anyone, nor would I want to.

Unfortunately until the greater majority of our society, culture, and western medical paradigm start to adopt more holistic views of medicine rather than only concentrating on the pharmaceutical side people will continue to needlessly suffer. Until true attention is given to those who truly do understand these diseases and how to effectively treat them so that their knowledge and techniques can be streamlined, standardized, and hopefully enhanced further they will only operate in their tiny practices doing what they can for those daring to try something different.
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: Worried again.

Postby christo on June 18th, 2013, 1:33 pm

I believe that the disease is curable for those who understand it from a certain perspective.


Please go the the alsforum and help all the poor souls unable to see it from the right perspective...
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Re: Worried again.

Postby SecretAgentMan on June 18th, 2013, 5:45 pm

First off when I said 'those who understand it from a certain perspective' I was referring to the doctors entrusted to know what they are doing to effectively treat it and guide the patient to make the proper lifestyle changes to reverse the damage and heal.

Second, I want to reiterate what I said:

SecretAgentMan wrote:People will open their minds to that which they are only willing to do. You cannot impose a perspective on anyone, nor would I want to.


Whenever I come across any individual suffering from any condition I merely share what I think is relevant and let people make up their own minds. With an open mind to new information you never know what opportunities open up to some people. You cannot force alternative medicine treatments on someone who refuses to even consider their potential validity. You cannot force someone to believe that what they have isn't a death sentence when they already believe it is. All you can do is show them different perspectives and pray they are open to considering them. The ball is in their court to determine where they will go from there.
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: Worried again.

Postby LApea on June 19th, 2013, 12:43 pm

I know exactly how you feel. I went through a period of time when I was the most fearful, and signs of the disease were everywhere. I don't think it's the universe trying to tell us something, it's our hyper perceptive mind picking up on everything that has to do with the disease we fear. I'm sure if it was another ailment, we would see signs everywhere as well.

I think with all of the things going on in your life, your body is going into fight mode...bringing back all those uncomfortable symptoms. I've been at this for a year now, and I still have bad flare ups that make me stop and think and worry. I think once the stress settles in your life, your symptoms will too--just like they have before.

I hope you feel better soon, I bet you will!!

Jay
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
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Re: Worried again.

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