How you can beat BFS - by a 10+ year veteran

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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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 26th, 2011, 10:47 am

Shanny63 wrote:Hi again, interesting that you bring up itching, I have been itching like a crazy woman since all this bfs rubbish started..does anyone else itch? Interesting...thanks again... :)



Yeah the itching thing is weird. I have always attributed that to nerves healing (or nerves suddenly being untrapped). My neuro always told me that itching is a sign of healing, so it is generally a good thing, so I just learned to shake it off and deal with it a long time ago.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 26th, 2011, 10:49 am

RandyR wrote:By the way, do you get any eye symptom's? That has been my latest freak out.....



What kind of eye symptoms? I have had a ton of floaters since my BFS started. Not to mention weird flashes. And every so often like a little purple or pink dot that I will suddenly see out of my left eye. But it's never consistent. I just chalk it up to my nervous system going haywire.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 26th, 2011, 10:54 am

chrissi wrote:Actually, that was what I felt when the BFS-Symptoms started, like tons of adrenalin rushing through my veins. I have felt like BFS before, about 12 years ago.Me and my hubby had a really bad motorbike accident in the woods, I felt how the bike slipped in a corner with over 100km/h and saw the trees in front of me and at this moment i knew I was going to die.....somehow missed the last tree in this wood and was slammed into a potatoe field. It took me several minutes to figure out I was not dead and OK, although the bike was an absolute mess and could't be repaired. After getting up from the ground, I felt all the BFS-stuff for the next days. The friend that picked us up had to carry me on his arms because I had the jelly legs, the tremors, and I could't stand loud noises for weeks. I remember that I even twitched a lot!!



Yeah I remember a similar thing happening with me right around the time I first developed BFS. There were some neighborhood kids who were going around pranking people at night, and what they would do was come up to your house and ring your doorbell at 2 in the morning. So you would be sound asleep and all of a sudden RINNGGGGGGGG. You would go shooting up out of bed and it would just scare the hell out of you. I remember those kids pranked us like four times over the course of a month, and it got me so jumpy I could barely even sit still for like five months. There is really nothing more damaging to a BFS person than to be startled out of sleep by a loud noise. I almost feel bad that I later murdered one of those kids and buried him under our house.
Last edited by MarioMangler on August 26th, 2011, 12:14 pm, edited 1 time in total.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby chrissi on August 26th, 2011, 11:57 am

Any noise during sleep will make me freak out at this point. And also in normal live. I thought maybe due to the monitor alarms in the past, when I had to jump out of bed immediately. But I've heard a lot of BFSers that share this. Last night I was startled like hell by my husband flushing the toilet 4 rooms away from sleeping room....not to mention that he came back, laid down and stared to snore immediatley, while I was lying awake shaking and nervous for almost an hour... :roll:
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: How you can beat BFS - by a 3+ year veteran

Postby RandyR on August 26th, 2011, 12:02 pm

MarioMangler wrote:
RandyR wrote:By the way, do you get any eye symptom's? That has been my latest freak out.....



What kind of eye symptoms? I have had a ton of floaters since my BFS started. Not to mention weird flashes. And every so often like a little purple or pink dot that I will suddenly see out of my left eye. But it's never consistent. I just chalk it up to my nervous system going haywire.



I get lots of floaters too, and I see flashes and blind spots in my perifial vision. But I have been having a little double vision. Not real bad, but I can see like the tops of the letters on the computer screen, kinda like the word has a shadow behind it. Then it looks like straight lines are moving and I see double on them. I was hoping it was from spending to much time on the computer(6 to 8 hours a day, not constant) I was spening much more.

I also started having ocular migrains right after the BFS started. The last two has been followed by all day headaches.
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But they who wait upon the lord shall
renew their strength; they shall mount up with
wings as Eagles; they shall run, and not be
weary; and they shall walk, and not faint.(ISAIAH 40:31)
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Re: How you can beat BFS - by a 3+ year veteran

Postby chrissi on August 26th, 2011, 12:11 pm

Interesting to read that here. I was having eye migrains long before BFS onset as well as floaters and flashes. It really was scared my but my ophtalamist said, this is very common for...stress. I think eye migraines are very scary. I had to stop once at the road because I had one. Do you lose your whole field of vision (I do) on the affected eye, or only parts? Hopefully this never happens with 2 eyes at the same time, or I'll be blind for half an hour...
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 26th, 2011, 12:16 pm

RandyR wrote: But I have been having a little double vision. Not real bad, but I can see like the tops of the letters on the computer screen, kinda like the word has a shadow behind it.



It sounds to me like you have astigmatism. I have that too, in my left eye, only I never realized it until an eye doctor pointed it out to me when I was 30. Have you been checked for astigmatism?
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby Simonaa on August 26th, 2011, 12:33 pm

The migraine, I also know!
2 years ago that was a couple of times!
I could see nothing and my tongue was numb, and then I can not speak properly!
Was in the hospital because I thought I had a stroke!
But everything was okay!

... I saw nothing more in both eyes!!
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Re: How you can beat BFS - by a 3+ year veteran

Postby RandyR on August 26th, 2011, 12:40 pm

MarioMangler wrote:
RandyR wrote: But I have been having a little double vision. Not real bad, but I can see like the tops of the letters on the computer screen, kinda like the word has a shadow behind it.



It sounds to me like you have astigmatism. I have that too, in my left eye, only I never realized it until an eye doctor pointed it out to me when I was 30. Have you been checked for astigmatism?



Yes I do have that, when I got my eye exam done a couple months ago she told me. I did not know anything about it, and sure in the heck was not going to google it.... :lol:

So that causes double vision? Is it something that will get worse?

*EDIT* And my eyes started this little jerking motion while reading some times, very disturbing...
PAX ARMIS ACQUIRITUR


But they who wait upon the lord shall
renew their strength; they shall mount up with
wings as Eagles; they shall run, and not be
weary; and they shall walk, and not faint.(ISAIAH 40:31)
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 26th, 2011, 1:00 pm

You can google astigmatism, it is nothing scary. It just means that your cornea is oval shaped instead of round. So the light bounces off it at weird angles and you get refraction problems sometimes (like double images).

A non scary link, I promise: http://en.wikipedia.org/wiki/Astigmatism_(eye)
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby mjc on August 26th, 2011, 1:26 pm

Mario

Great post. I hope it isnt your swan song!

When i first came down with BFS 18 months ago and found this board i though you were mean. I said "why is this guy so direct and cavalier about his symptoms...why does he basically just tell people to stop crying and move on with life" I soon leaned why that is needed and i cant say enough how much i appreciate all that you have done for this board.


People like you are so vital because you have been through it all. When BFS hit me i want to see my best friend who is a MD at the mayo clinic in Rochester MN. He examined me at his house and said...I dont know what you have but it isnt not ALS...now lets go get some pizza." I of course didn't believe him...i mean after all what does he know. So i went to my primary MD and a Neuro who all said the same thing. The problem is they had no idea what is going through.

My twitches have come down about 50-70% over the last 6 months. I would agree with you that anxiety played a major major major role in my condition.

I truly believe i am on my way to a full recovery.


Thanks again for all that you do
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Re: How you can beat BFS - by a 3+ year veteran

Postby RandyR on August 26th, 2011, 3:35 pm

Thanks Mario!

I don't need the link, you just made my day. I have been worring about this for several months for nothing.

Glad I asked you.... :D
PAX ARMIS ACQUIRITUR


But they who wait upon the lord shall
renew their strength; they shall mount up with
wings as Eagles; they shall run, and not be
weary; and they shall walk, and not faint.(ISAIAH 40:31)
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Re: How you can beat BFS - by a 3+ year veteran

Postby raindog on August 26th, 2011, 4:57 pm

MarioMangler wrote:
RandyR wrote: But I have been having a little double vision. Not real bad, but I can see like the tops of the letters on the computer screen, kinda like the word has a shadow behind it.



It sounds to me like you have astigmatism. I have that too, in my left eye, only I never realized it until an eye doctor pointed it out to me when I was 30. Have you been checked for astigmatism?


I got them in both eyes, bit of a bummer as i cant by the cheap off the shelf reading glasses now :(
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Re: How you can beat BFS - by a 3+ year veteran

Postby tiggida on August 26th, 2011, 8:00 pm

mario, another fellow californian!! i live in the antelope valley.That's not too far from Upland. I don't know why but I feel better the more people I see live near me. Great, Great post. It actually almost made me cry. I needed to read this. Thanks for taking the time to post this.
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Re: How you can beat BFS - by a 3+ year veteran

Postby SuziQ on August 26th, 2011, 11:36 pm

Mario, dude, you ROCK!

That was an awesome post, and I vote that it be made a sticky, too.

I think I shared on another thread recently that my husband, who had believed himself cured of bfs for about 10 years, has recently developed leg weakness and said, (to my utter surprise and amusement,) "I think my bfs is acting up."

I find that my symptoms are minimal, for the most part. I can't remember the last time I had a fasciculation; though knowing this silly, goofy li'l syndrome, I'll probably twitch all night long and have a new hot spot tomorrow, just for being c-ocky, tonight. ;)

Blessings y'all from hurricane-ville. :)
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Re: How you can beat BFS - by a 3+ year veteran

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