Startling Symptom

Information about how to manage or reduce the severity of BFS symptoms

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Startling Symptom

Postby Tiber2011 on August 15th, 2013, 9:28 pm

Ever since I came on these forums, I've started to feel slowly better. Less fasics.

However, today, I scratched the inside edge of my lower forearm/wrist. Now, I'm also VERY skinny - I have no muscles there. It's skin and bone where my wrists are.

I've felt this before when the BFS started - I scratch that area, and I get a little vibration/shock that extends into the thumb. However, this time it was a MAJOR shock. Like my wet thumb touched a light switch.

I got worried -again. Especially when I found out about my friend's mom who just passed from ALS.

BFS? MS? Lack of muscle causing the nerve to become easily irritated?

Also, tons of floaters in my eyes today; much more than usual. I think I had an occular migraine.
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Re: Startling Symptom

Postby aztwitchy on August 15th, 2013, 10:40 pm

you had a clean EMG and NCV, if i remember correctly you were evaluated and cleared.

BFS\PNH does some crazy stuff, produces some bizarre symtpoms. I have a couple friends who have MS and during the beginning half of my BFS I would constantly try to create associations in my mind and create an MS worry. I finally learned to stop doing that. I would venture to say you are doing this too.

My suggestion would be to escape the worry cycle and give yourself some time to see this symptom pass....a new one will pop up and you'll get worried again but you gotta remind yourself it will go away just like the others did.

the other things that helped me in regards to anxiety were eliminating caffeine, getting treated to get my sleep back on track, and cutting back on work related stress.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Startling Symptom

Postby Tiber2011 on August 16th, 2013, 8:34 am

aztwitchy wrote:you had a clean EMG and NCV, if i remember correctly you were evaluated and cleared.

BFS\PNH does some crazy stuff, produces some bizarre symtpoms. I have a couple friends who have MS and during the beginning half of my BFS I would constantly try to create associations in my mind and create an MS worry. I finally learned to stop doing that. I would venture to say you are doing this too.

My suggestion would be to escape the worry cycle and give yourself some time to see this symptom pass....a new one will pop up and you'll get worried again but you gotta remind yourself it will go away just like the others did.

the other things that helped me in regards to anxiety were eliminating caffeine, getting treated to get my sleep back on track, and cutting back on work related stress.


Not only 2 clean EMGs, but a brain and back MRI, too.

I also get a little shock into my feet if I rub my Achillies tendons with my legs stretched back when sitting in a chair. Doesn't always happen.

The MS worry is definitely eating me up. I was consumed with ALS worry, but I put that aside. Occasionally I'll get into a little ALS panic. But now I'm hyper-vigilant for MS stuff.

Now I'm just feeling little buzzes and fuzzy feelings all day from my hands down, plus other weird sensations in my legs (a tingly section, a weak section, etc.). Sometimes my face will feel shaky.

And my right shoulder still gets fuzzy when I move my arm inwards, work on the computer too long, or carry something in front of me with that arm.

I am sleeping almost though the whole night uninterrupted now. My body will still get up at around 2 am for some reason, but I sleep again after 20 minutes.
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Re: Startling Symptom

Postby SecretAgentMan on August 16th, 2013, 9:56 am

I realize you said this is new for you, but I've had stuff like this as far back as middle school that I can remember, maybe sooner. I'm skinny too. I've always had really sensitive funny bone nerves and have an occasional nerve in my jaw that will light up sometimes when I open up wide like to yawn. I had it before BFS and now that I'm over BFS, so I don't think its BFS related. I think it's just a symptom of having a nerve get pressure applied the wrong way. Fear not.
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Re: Startling Symptom

Postby Tiber2011 on August 16th, 2013, 10:13 am

SecretAgentMan wrote:I realize you said this is new for you, but I've had stuff like this as far back as middle school that I can remember, maybe sooner. I'm skinny too. I've always had really sensitive funny bone nerves and have an occasional nerve in my jaw that will light up sometimes when I open up wide like to yawn. I had it before BFS and now that I'm over BFS, so I don't think its BFS related. I think it's just a symptom of having a nerve get pressure applied the wrong way. Fear not.


My funny-bone nerves (which is the Ulnar - I relearned it during my ALS-MS mania...) are sensitive there because I'm just skin-and-bone on my elbows, too. Always upset my ulnar nerves as a kid, bouncing and falling and jumping and sliding around.

Back in May, during the height of my symptoms, my right pinkie would twitch up and down I panicked, but also realized it would occur when:
1. I'd be driving, and I'd have my right arm resting on the seatback of the passenger seat, with my elblow resting on the bolster.
2. I'd be working, and my right arm would control the mouse and I'd rest the elbow on my chair's armrest.
3. Texting - arm is always curved. And I text and surf on my phone all day (wonder if that causes my right shoulder to feel that way, too).
4. Sleeping. When lying on my back, I'd place my arms on my chest. Elbows are curved. And then the pinkie would twitch or my hands fall asleep.

I try not to use my right elbow on anything now; seems to have work (I hope. And I hope something else didn't cause that pinkie movement beyond myself/BFS).

I've gotten some shocks down the ulnar nerves during bad symptom days by just hitting the backs of my upper arms or my elbows recently.

I suppose hyper-mobility and being skinny doesn't help nerve irritation.

This stuff just all came on like "BAM!" in March. I had slight fasics so many times before in my younger days, but I always said "I'll drink more water" or "I'll walk it out." And those usually helped.

When I sit, I'll feel a tingle/buzz/vibration in lower legs/feet. And upon getting up or immediately after sitting, I get a pulsating buzz in my left thigh. It'll go away after awhile.

I feel so exercise-intolerant lately. I do gentle physical therapy on my legs/glutes 2x a week. I was in so much pain yesterday after my lest visit.

But, all the docs say I'm ok on the disease part. My physiatrist said "You don't have it. The physical therapist emailed me saying you talk a lot about MS and ALS. Don't worry."

A physiatrist should have seen MS and ALS patients at this point in his career (as well as the neuros). I keep freaking out I'm one of the 5% abnormal patients.
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Re: Startling Symptom

Postby aztwitchy on August 16th, 2013, 10:43 am

Tiber2011 wrote:
aztwitchy wrote:you had a clean EMG and NCV, if i remember correctly you were evaluated and cleared.

BFS\PNH does some crazy stuff, produces some bizarre symtpoms. I have a couple friends who have MS and during the beginning half of my BFS I would constantly try to create associations in my mind and create an MS worry. I finally learned to stop doing that. I would venture to say you are doing this too.

My suggestion would be to escape the worry cycle and give yourself some time to see this symptom pass....a new one will pop up and you'll get worried again but you gotta remind yourself it will go away just like the others did.

the other things that helped me in regards to anxiety were eliminating caffeine, getting treated to get my sleep back on track, and cutting back on work related stress.


Not only 2 clean EMGs, but a brain and back MRI, too.

I also get a little shock into my feet if I rub my Achillies tendons with my legs stretched back when sitting in a chair. Doesn't always happen.

The MS worry is definitely eating me up. I was consumed with ALS worry, but I put that aside. Occasionally I'll get into a little ALS panic. But now I'm hyper-vigilant for MS stuff.

Now I'm just feeling little buzzes and fuzzy feelings all day from my hands down, plus other weird sensations in my legs (a tingly section, a weak section, etc.). Sometimes my face will feel shaky.

And my right shoulder still gets fuzzy when I move my arm inwards, work on the computer too long, or carry something in front of me with that arm.

I am sleeping almost though the whole night uninterrupted now. My body will still get up at around 2 am for some reason, but I sleep again after 20 minutes.


this is all BFS stuff...the nerves are in an excited state so you can expect to have all kinds of shocks, zips, buzzes, tingles, and numbness....its all par for the course. Don't let your mind run wild when you experience it and things will improve.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Startling Symptom

Postby SecretAgentMan on August 16th, 2013, 11:49 am

Just for argument sake, let's pretend for a second that you're in the 5%... What would you do? Would you freak out? Give up? Accept it as a death sentence? Or would you decide to not give up and start to try bolder approaches? Would you decide to shed the fear and truly make the most of your life in the time you had left? These physical bodies do not last forever. Sooner or later that day comes for all of us. What we make of each experience life presents us with is up to us. We can make the most of it or we can go through it kicking and screaming. Your attitude and mentality set the tone. Realize this choice is yours to make at any time. Do with it what you will, but always remember you can change your course at any time. I personally prefer to make the most of things and look for the silver lining. The ride is so much more enjoyable this way. :)
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Re: Startling Symptom

Postby Tiber2011 on August 16th, 2013, 12:43 pm

SecretAgentMan wrote:Just for argument sake, let's pretend for a second that you're in the 5%... What would you do? Would you freak out? Give up? Accept it as a death sentence? Or would you decide to not give up and start to try bolder approaches? Would you decide to shed the fear and truly make the most of your life in the time you had left? These physical bodies do not last forever. Sooner or later that day comes for all of us. What we make of each experience life presents us with is up to us. We can make the most of it or we can go through it kicking and screaming. Your attitude and mentality set the tone. Realize this choice is yours to make at any time. Do with it what you will, but always remember you can change your course at any time. I personally prefer to make the most of things and look for the silver lining. The ride is so much more enjoyable this way. :)


Such is true, I suppose. My way of dealing with anxiety is envisioning a worst-case scenario.
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Re: Startling Symptom

Postby muppetdog on August 17th, 2013, 10:10 pm

Interesting effect you got by pressing on your wrist. I know there Is a nerve cluster down by inside and just above the elbow and if you find it and push it right it will send an electric shock up your arm and through all your fingers. There is also one just on the outside of your leg above the ankle(it's kind of hard to find) that if you find it will send the electrocution feeling through your whole foot. Oh, and there is one on the outside of the knee that will do it for the whole leg. It hurts like crazy if you can find them.

You can hunt around enough on your body and find a bunch of them. If you get good enough you can nail your friends and send them through the roof.

MD
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Re: Startling Symptom

Postby muppetdog on August 17th, 2013, 10:49 pm

Oh and floaters are not caused by ocular or aural migraine. They are pieces of protein in the fluid in your eyes :) Its like saying you have more dandruff from a regular headache. unrelated.

You will know it if you have an aural migraine. Its like some of your vision will kind of disappear, then this electric snake will start to grown and pulse and probably dissipate out of the corner of your eye. The process takes around 30min, is very disorienting and a bit scary. For some people they will be the preciser to a regular migraine.
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Re: Startling Symptom

Postby chrissi on August 18th, 2013, 4:47 am

Muppetdog is right about the optical migraines, I got them quite a while. This is something that makes you completely blind on that yey for quite accurately 30 minutes. It scared the hell out of me when it happened the first time. It is a disregulation ( honestly I used to be just one walking Dysregulation in all parts of my body....)...
The startling responses are normal for BFS. They can be induced by touch, but for me I also got this extremely exaggerated startling response from noises. I had phases I could not put on my flip flops because everytime my toes touched the shoe my boddy overreacted and I pulled back my foot :roll:
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Re: Startling Symptom

Postby SecretAgentMan on August 18th, 2013, 7:28 am

Tiber2011 wrote:Such is true, I suppose. My way of dealing with anxiety is envisioning a worst-case scenario.


There are studies where they hooked professional athletes up to brain wave scanners. The athletes were told to mentally prepare for an event, such as running a quarter mile sprint, by just running through the event in their heads first. They recorded the brain wave activity. They then told the athletes to perform the actual event. With the probes still attached, they ran the quarter mile sprint for real this time. The studies showed that the brain wave patterns were almost identical. Whether you are running through something in your head or doing it for real, the brain doesn't know the difference and your body reacts the same way. By envisioning the worst case scenario you are subjecting your body to stress that is not necessary and a waste of your potential.

It may be a little difficult at first, but you can train yourself to start envisioning the best case scenario as your default rather than the worst case scenario. The up front work will be the toughest, but it's worth it. Why not make those brain waves provide you with some good vibes rather than some negative ones? And if you think that positive thinking just isn't realistic, think again and look at research such as what I referenced again. Most people have no idea the power that they really have to tip the scales in their favor or to their contrary.
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Re: Startling Symptom

Postby chrissi on August 18th, 2013, 7:37 am

Imagining the worst case scenario and then finding solutions for it is a very common way to treat patients with GAD. My dad tried it on me because he has GAD himself and it helped him. Unfortunately, with BFS, this is NOT a solution. Because the worst case scenario is really bad and I was scared to death and feeling even worse.
So I would really recommend the best case scenario. This is something I used to do and it helped me a lot. During meditations, I ofte imagined a wonderful summer I would have with my family and catching up all the fun I had missed in that terrible summer with BFS.
I had a great summer :)
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Re: Startling Symptom

Postby muppetdog on August 18th, 2013, 8:12 am

Both Chrissi and SAM are so right. If you start backing yourself into a mental corner by thinking of a future where you are sick with some disease or that you will get worse, will take you down a dark path.

Odds are there is no way in hell that you have MS.

I remember when I first started twitching and them my feet started to go numb. I was actually sitting in bed deciding how I was going to spend my time with my family if it turned out to be a brain tumor or something. It was sad and it does not help. You will start to examine ever little minutiae of your body looking for progression towards some phantom illness that will never come.
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Re: Startling Symptom

Postby Tiber2011 on August 18th, 2013, 5:12 pm

muppetdog wrote:Interesting effect you got by pressing on your wrist. I know there Is a nerve cluster down by inside and just above the elbow and if you find it and push it right it will send an electric shock up your arm and through all your fingers. There is also one just on the outside of your leg above the ankle(it's kind of hard to find) that if you find it will send the electrocution feeling through your whole foot. Oh, and there is one on the outside of the knee that will do it for the whole leg. It hurts like crazy if you can find them.

You can hunt around enough on your body and find a bunch of them. If you get good enough you can nail your friends and send them through the roof.

MD


Thanks for this. Never knew! I found most of them apparently.

My opthamologist says I get occular migraines, but I'm so nervous about neuritis.
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Re: Startling Symptom

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