It's Getting Worse, Scared

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It's Getting Worse, Scared

Postby AP151 on April 12th, 2014, 9:27 am

My foot used to twitch 10-15 times a day. Now it's every minute. My foot feels so weird. I can't shake my fear of ALS. How could I possibly be having this many twitches in the same spot and have it be benign? My foot feels odd and sometimes it hurts to walk on it. Vaguely though.
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Re: It's Getting Worse, Scared

Postby Yuliasir on April 12th, 2014, 9:42 am

What you have is called hotspot, common issue in our condition. Search for 'hotspot' and you will see how it could still be benign. However it seem to be 'worse' that just trwitching, it will go away eventually. No wonder that your foot hurts a bit becasue you have involuntaqry muscle activity in it.

As for shaking your fear of ALS, please consider that people with ALS do not have only twitching, thye have - very soon - loss of functions. And they invented the rule called FAILING NOT FEELING, becasue ALS forums are ful of hypochondriac people which try desperately to encopmass the difference between their condition and ALS. They usually say: "but I feel like my leg is going to give up", and ALS people usually have to say: "but instead we once felt that we DO NOT HAVE a leg, like it is 100% not here, absent, not working at all". We feel, they fail - to walk, speak, swallow, do fine movements, etc.

until you do not have any sign of loss of function - no matter if you twitch 15 times per day of 15 times per minute.
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Re: It's Getting Worse, Scared

Postby leaflea on April 12th, 2014, 11:23 pm

Yuliasir, I have been away for a bit. You are still here bringing light and sunshine, reality and encouragement. It is what I needed tonight. Thank you for being here!
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: It's Getting Worse, Scared

Postby Yuliasir on April 13th, 2014, 3:23 am

yep still here :))
feel free to Pm if you need some talk
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Re: It's Getting Worse, Scared

Postby swickman on April 14th, 2014, 12:11 pm

BFS is such an odd condition. In my opinion, I think most of my issue is mental. I have had constant twitching of a specific muscle in my left calf for nearly six months now and sporadic twitching of other muscles throughout my body during that same time frame. I finally went to the doctor and he confirmed I have BFS. The funny thing is that I have been having new twitching / buzzing in the pad of my right thumb lately and I have started to obsess that I might have Parkinson's due to a tremor that I have in my right arm. Of course, guess what happens? My twitching in my calf has disappeared. The human mind is so powerful that way.

Yuliasir, are you aware of people having hotspots in the thumb like what I have been experiencing? It's sort of like an on-again, off-again buzzing of the muscle right next to the bone near the pad of the thumb. I tried posting in General Topics but haven't had any responses from anyone with a similar experience.
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Re: It's Getting Worse, Scared

Postby J4son on April 14th, 2014, 12:47 pm

swickman wrote:BFS is such an odd condition. In my opinion, I think most of my issue is mental.


What is mental is the fear. It’s the intellectual and emotional link that the mind makes between noticing fasciculation without any other symptom and the certitude of it being the beginning of a dreadful disease. Some people even after months and months of twitching without any other major symptom are still convinced that it might be MND. “Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering.” According to the green little Mr. Yoda. But also, “Fear is the path to Cyberchondria. Fear leads to muscles-tension. Muscles -Tension lead to twitching. Twitching leads to obsession.” According to my humble experience :)


swickman wrote:I have had constant twitching of a specific muscle in my left calf for nearly six months now and sporadic twitching of other muscles throughout my body during that same time frame. I finally went to the doctor and he confirmed I have BFS. The funny thing is that I have been having new twitching / buzzing in the pad of my right thumb lately and I have started to obsess that I might have Parkinson's due to a tremor that I have in my right arm. Of course, guess what happens? My twitching in my calf has disappeared. The human mind is so powerful that way.


Same here, every time I obsess and focus on some new body sensation, I notice that the symptoms have disappeared from the place where I used to obsess previously. :)
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Re: It's Getting Worse, Scared

Postby Yuliasir on April 14th, 2014, 1:08 pm

I had read about thump pad hotspot for several times. I think nobody replies just becasue it is not unique one and maybe each 2nd fellow can say yes I had it or I have it...
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Re: It's Getting Worse, Scared

Postby swickman on April 14th, 2014, 1:52 pm

J4son and yuliasir, thanks for the responses!

J4son wrote:Some people even after months and months of twitching without any other major symptom are still convinced that it might be MND.


The thing that keeps tripping me up is that the symptoms aren't exactly the same each time. When I notice a new symptom, my mind instantly jumps at the thought of what it portends. Between having this condition for six months and seeing my GP several times and a neurologist once, you'd think I could rest assured that it's not something major.

As to AP151, please don't let yourself worry too much about the ALS fear. There are lots of good posts on this site to help explain why twitching is not the first sign of ALS The reason I tell you about my story with the calf is that I spent a lot of time worrying about that twitching, only to have the twitching go away as soon as I began obsessed about another symptom. When I say twitching, I mean a twitch every 3-4 seconds in the same muscle 24/7 for nearly six months. And just like THAT, it went away.
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Re: It's Getting Worse, Scared

Postby leaflea on April 14th, 2014, 8:22 pm

swickman, I do think what you describe is common. I don't know about the exact spot, but I have seen many similar reports. I have had a buzzing about the size of a quarter, just under my pointer finger on the palm of my hand. And, speaking of the POWER of the MIND...I do not recall if TDenver mentioned itching palms, but I think he did, and I'm too chicken to look... You'll never guess what happened to me today? Yes. How many of us will start to have itching palms?
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: It's Getting Worse, Scared

Postby DoubleD on April 15th, 2014, 12:27 am

It's officially started. Everything will now be weighed against TDenver post. Please vets we need to stay on top of this. For TDenver and the newbies.

Foot twitching, buzzing, pain........is soooooooo common. Your feet take an incredable beating all day long. It's no wonder they are main twitchers . Mine have twitched, been in extreme pain, lost feeling, nerve pain, felt like sweat beads....you name it. But it's BFs. No doubt. I've had it ALL for 10 years. Don't discount normal life stuff that happens as a sign of something deadly. When I first came here it was because I read an article about an ALS patient who had trouble yawning. Guess who started having trouble yawning ? Me. Also we are getting older by the minute. Knees will hurt, ankles, shoulders , shins, jaws......did we think that we were invincible? Life with BFs happens. Getting old happens. Anxiety makes everything worse!!!

It's hard. Trust me I know it hard. I have sympathy , I really do. Anyone can pm me at any time. I swear I will answer your questions

Take care

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: It's Getting Worse, Scared

Postby Yuliasir on April 15th, 2014, 12:37 am

The thing that keeps tripping me up is that the symptoms aren't exactly the same each time.

and this is a hallmark of BFS :) it is a crazy circus of symptomes, becasue ALS involves only motor neurons and, to a mildest point, some other systems of the body, while in BFS huge role is given to systems like immune (with a response in multiple tissues, causing swelling, itching, and probably, if spreaded to central brain, fears attacks too!), autonomous nervous system (which really affects a lot of organs) and maybe some other too. That is why in BFS symptomes are various, mixed, and non-stable, that is why we have hot spots and jumping twitches, etc. etc.

people with single system damage have consistent steady symptomes and clear signs of damage.
We have completely vice vesra condtion - we have multiple damages and especially quirky thing is that they are very hard to spot. We can measure activity of central nervous system by EEG, we can measure muscle activity by EMG or evoked potentials, but what to do with non-specifc inflammation for example? It hardly could be measured, as far as I understand, by quantitative reactions, but still affects our life quality... Autonomous system affects almost everything in our body from heartbeat to defecation, but hardly you can insert a needle in the guts to measure its activity :))) it is too widespread... Part of our troubles are of 'software' nature (failure in signal processing pathways), and to spot this we need some very specific methods.

So this variability of symptomes for me clearly points (together with the lack of significant deficite in any function) to a multiple non-specific damage common to BFS, which is 100% opposite to very specific damages to specific groups of neurons found in MND.
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