Man I was doing so good

BFS Online Support Group

Moderators: JohnV, Arron, garym

Man I was doing so good

Postby tripper76 on February 19th, 2011, 5:04 am

I was doing really good the last few months now these little twitches are everywhere like they were in the begining little tickles or pops and thumps everywhere face hands legs chest butt everywhere ughhhhhhhh man lol this is unreal thats all I know OK Fine its not ALS They tell me you tell me my family tells me and I believe that 98% too But its so overwhelming its hard not to think its something sinister Thats why my anxiety level is threw the roof someone I think Barbie told me the first day or second day I joined this board 19 months ago it gets better with time I wish that time would come I would rather have one leg then have this *beep* lol how bout ya all
A CALM SEA NEVER MADE A WORTHY SAILOR!
User avatar
tripper76
Hero
Hero
 
Posts: 316
Joined: August 6th, 2009, 8:00 pm

Re: Man I was doing so good

Postby danny13 on February 19th, 2011, 8:44 pm

Tripper I hear you loud and clear!! Been told by 3 top neurologists its benign, been 10 months but when you look at that muscle twitching away you wonder *beep* this aint right!.Still have days where my anxiety is through the roof, but take it day at a time.. but your right its still tough to deal with after all these months...but deep down i know im fine as are you.
danny13
Member
Member
 
Posts: 35
Joined: February 8th, 2011, 6:05 pm
Location: New York

Re: Man I was doing so good

Postby tripper76 on February 19th, 2011, 11:44 pm

Thanks Danny I think deep down I know that too ...but holy crap man
A CALM SEA NEVER MADE A WORTHY SAILOR!
User avatar
tripper76
Hero
Hero
 
Posts: 316
Joined: August 6th, 2009, 8:00 pm

Re: Man I was doing so good

Postby aussie sufferer on February 20th, 2011, 12:22 am

G'day Brian. Sorry to hear of your ongoing concerns and hassles. It sure has got you bad bud. Mate I think you just need to hang tough. May be have a go at trying to pinpoint what is perhaps making the symptoms worse. Chart when symptoms are bad and good. Is there anything you have either done or eaten or experienced that might have contributed to this bad episode. Also when BFS symptoms are not as bad or even 'good'- what was contributing to that. The theory is to try and identify the things that make it bad and try and eliminate or reduce them. And the good things try and replicate. Distract you self as well ( keeping busy), that certainly helps me. You have had enough chat on anxiety so I am not going there again!
cheers buddy , sorry I can't offer any better solutions. No one should have to deal with the sh*t you constantly seem to be dealing with.
keep the chin up!
cheers
Rodger
User avatar
aussie sufferer
Saint
Saint
 
Posts: 651
Joined: December 12th, 2009, 8:21 pm
Location: Country Western Australia, Australia

Re: Man I was doing so good

Postby tripper76 on February 20th, 2011, 3:18 am

Hey Rodger
Thanks for the reply yeah im not sure I have been trying to pay attention too the things I eat and do and see if anything makes it worse or not I dont know if my symptoms are worse then most or my anxiety because I seem too be the only one constantly complaining lol
A CALM SEA NEVER MADE A WORTHY SAILOR!
User avatar
tripper76
Hero
Hero
 
Posts: 316
Joined: August 6th, 2009, 8:00 pm

Re: Man I was doing so good

Postby mommylondon on February 20th, 2011, 11:16 am

Hi Brian, I really am sorry that things are messing with you the way they are rite now, and I wish there was something I could say that would be so magical that all this would just go away for you, I really do. I hate to hear anyone in pain (emotionally or physically) with this condition. You are not the only one complaining Brian and you are far from the only one trying desperately to cope with this condition. My phone is ringing about every 2 hours with someone who just needs to vent about it or ask questions or some even cry. I never complain about this though because I know first hand how hard it is to have and feel all this and feel like you have nowhere or anyone to turn to with it after you have done the doctor merry-go-round and still have a good handful of some freaky symptoms and be left standing there saying to your self "well what then, what the h*ll is this"?

I'm rambling again, but I just didnt want you thinking that you are the only one who has not reached the level yet where you can just sit and hang out with BFS and be like "oh well". I think this takes everyone different amounts of time to reach this level. But I am very confident that you are still fine, as fine as anyone can be with dealing with this cr*p of a syndrome. You helped me out a lot when I was struggling through my dark time, and I just wanted you to know that I'm here and the board is here, vent all you want, thats what we all here for. I truly believe you are having a flair up for whatever reason, and you will come out of this soon and be able to start moving forward again, I promise :D

Stay positive Brian and know that we are here for you, and know that you will get through this.

Your friend

Robynn :D
Quote: To mend the hearts of everyone that feels alone.
http://www.youtube.com/watch?v=Rd6BlNKCkRs
User avatar
mommylondon
Saint
Saint
 
Posts: 1535
Joined: May 16th, 2010, 10:37 am
Location: Indiana

Re: Man I was doing so good

Postby tripper76 on February 21st, 2011, 12:35 am

Thanks Robynn
and I am very pleased that you seem too be doing so much better I remember in your dark time good girl for getting along
Hugs
Brian
A CALM SEA NEVER MADE A WORTHY SAILOR!
User avatar
tripper76
Hero
Hero
 
Posts: 316
Joined: August 6th, 2009, 8:00 pm

Re: Man I was doing so good

Postby Barbie800 on February 21st, 2011, 9:19 am

Brian, only you can convince yourself that you are fine. The doctors can't do that for you anymore. They have told you over & over that what you have is benign and now only you can convince yourself that it's true. It took me almost 2 years to believe it also but once you do, you will feel so much better. I promise. You will get there. It just takes some of us longer than others.

~leslie
Barbie800
Saint
Saint
 
Posts: 1169
Joined: April 22nd, 2009, 2:39 pm
Location: Pennsylvania, USA

Re: Man I was doing so good

Postby zenseo on February 21st, 2011, 12:04 pm

Brian,

I just browsed back through some of your very early posts and they're very similar to some of mine. I recently resurfaced on the boards after a few years of very minimal posting due to a recent BFS flare up. My twitching was preceded by other health issues/anxiety (vertigo, unequal pupils) and then one evening all hell broke loose (twitching and jerking all over). Not one day has gone by in the past 7 years that I have not twitched. Some less than others, of course.

This is such a frustrating condition, with so many questions left unanswered. I've accepted the incessant calf/foot twitching, but still sometimes freak out when I get a new hot spot. For the past three months I have had an eyelid twitch and violent thigh twitch come and go. Time does make this da** syndrome better and easier to tolerate—we adjust. I've had times where I don't even notice it. But, when a hot spot pops up, my mind focuses in on each and every little twitch.

You're fine. After 7 years, I know how this affects my body. I know where the twitches are and I know about how long a hot spot will last (for me, up to a month). I still sometimes get so frustrated that I begin punching my leg and demanding that it STOP. For some reason, that doesn't work. :evil:

It really does help to stay busy and soon you will ignore the fasciculations. What usually sets me back is when I begin focusing in on them, researching, and then the anxiety leads to slight depression and I get in a real funk. Eventually it passes and I get back to living life.

Best,
Sean
User avatar
zenseo
Selfless giver of time
Selfless giver of time
 
Posts: 184
Joined: November 22nd, 2004, 10:53 am
Location: Michigan

Re: Man I was doing so good

Postby sixdeep357 on February 23rd, 2011, 11:55 am

zenseo wrote:Brian,

I just browsed back through some of your very early posts and they're very similar to some of mine. I recently resurfaced on the boards after a few years of very minimal posting due to a recent BFS flare up. My twitching was preceded by other health issues/anxiety (vertigo, unequal pupils) and then one evening all hell broke loose (twitching and jerking all over). Not one day has gone by in the past 7 years that I have not twitched. Some less than others, of course.


Best,
Sean


Sean,
You have Vertigo with your BFS? I was told I have Migraine Associated Vertigo. However, the migraine meds do nothing for my dizziness. Valium, however, does help. I'm wondering if the dizziness is BFS and not migraine at all, since valium is used to treat anxiety? Not that valium helps my twitching, but it does take the edge off the dizzies. I also have visuals too (visual snow aka persistent migraine aura). I've been trying to find a connection between migraine and twitching, but no luck. I'm starting to think the two are unrelated, and that I don't have migraine at all (visual snow is labeled migraine but debated as such)

Thoughts?
sixdeep357
Member
Member
 
Posts: 30
Joined: August 26th, 2009, 10:43 am

Re: Man I was doing so good

Postby tripper76 on February 23rd, 2011, 5:51 pm

Sean,
You have Vertigo with your BFS? I was told I have Migraine Associated Vertigo. However, the migraine meds do nothing for my dizziness. Valium, however, does help. I'm wondering if the dizziness is BFS and not migraine at all, since valium is used to treat anxiety? Not that valium helps my twitching, but it does take the edge off the dizzies. I also have visuals too (visual snow aka persistent migraine aura). I've been trying to find a connection between migraine and twitching, but no luck. I'm starting to think the two are unrelated, and that I don't have migraine at all (visual snow is labeled migraine but debated as such)



I have Visual disturbances ie Tracers floaters blurry snow flashing lights ect also have dizziness and vertigo and major Twitching tremors memory problems numbness tingles pains cramps ect I have had 5 ct scans and MRI of brain in the last year or two and everything is normal had 2 full eye exams everything normal
A CALM SEA NEVER MADE A WORTHY SAILOR!
User avatar
tripper76
Hero
Hero
 
Posts: 316
Joined: August 6th, 2009, 8:00 pm

Re: Man I was doing so good

Postby zenseo on February 23rd, 2011, 6:35 pm

My health anxieties began in 2002 with a really rough bout of vertigo. Almost a year to the date later in 2003, I experienced another horrible bout. In 2004, I once again was struck with an episode and my GP finally ordered an MRI. While waiting for the MRI appointment, I noticed one evening that I had unequal pupils and really freaked out. The MRI was done in July of 2004 and came back normal. It was just a few short weeks later that the twitching started.

I was absolutely convinced that I had MS at first, then AL*. In December of 2004 I had an EMG and it was normal, too. I've had a second opinion from another neurologist, although he did not conduct any testing. Early on I had perceived weakness. I used to drop things all the time and do all the self-testing. Looking back, I believe all of that was anxiety. Seven years later, I am still here—no weakness or atrophy. In fact, I finally began gaining weight a couple of years ago. When the anxiety sets in—at least for me—I struggle to maintain my weight. So, early on it seemed very logical that I was suffering from something dubious. Here's the thing: None of us have anything like MND. In the summer of 2009 a colleague of mine complained of some weakness and slurred speech—not twitching. Sadly, she passed away this past summer, less than a year after her dx. MND progresses rapidly. Sorry, I am going way off topic here.

Thankfully (Sean knocks on wood), I have not had another bad bout of vertigo since 2004. For me, I tend to revisit my first self DX of MS since I have had such a myriad of strange symptoms: vertigo; tingling in hands, arms and chin; incessant muscle twitching; unequal pupils; and a false sensation of burning in my lower legs. Only the twitching has been a constant, all other symptoms come and go.

Sean
User avatar
zenseo
Selfless giver of time
Selfless giver of time
 
Posts: 184
Joined: November 22nd, 2004, 10:53 am
Location: Michigan

Re: Man I was doing so good

Postby sixdeep357 on February 24th, 2011, 3:12 pm

tripper76 wrote:I have Visual disturbances ie Tracers floaters blurry snow flashing lights ect also have dizziness and vertigo and major Twitching tremors memory problems numbness tingles pains cramps ect I have had 5 ct scans and MRI of brain in the last year or two and everything is normal had 2 full eye exams everything normal


Brian,
You are not alone. I have had visual snow since I was in 3rd grade, non-stop. People get it with migraines and it goes away. Mine has never gone away. The medical term is Peristent Migraine Aura. Now, I'm dealing with the vertigo too. It's hard to not add the visual snow with the vertigo and the muscle twitching, and use probability to say that one THING is causing it all. But at this point, I think it's important to start separating symptoms. After all, can't a person have diabetes and arthritis at the same time, two completely unrelated conditions? I constantly feel the need to add muscle twitching to everything else, but I'm to the point now that the muscle twitching has been diagnosed as BFS. If I'm dizzy, it's probably migraine, like my ENT said.

At least it's good to know that you're not alone. Know that someone else has the exact same symptoms you just described, including the dizziness and the visuals along with twitching 24/7. Maybe we're long lost cousins! LOL
sixdeep357
Member
Member
 
Posts: 30
Joined: August 26th, 2009, 10:43 am

Re: Man I was doing so good

Postby zenseo on February 24th, 2011, 3:28 pm

Good post! I often find myself trying to lump other symptoms in with the twitching—partly because I feel like I may uncover some condition doctors have overlooked. My vertigo was dx as… Ready for this? Benign Positional Paroxysmal Vertigo. I will say that I will take the twitching over the vertigo any day, it is just plain horrible.
User avatar
zenseo
Selfless giver of time
Selfless giver of time
 
Posts: 184
Joined: November 22nd, 2004, 10:53 am
Location: Michigan

Re: Man I was doing so good

Postby tripper76 on February 24th, 2011, 4:32 pm

LOL Yeah
Long lost cousins ...lol yep I have all of that stuff just out of curiosity did you ever take paxil I took paxil for 10 years and got off it 2 and a half years ago
A CALM SEA NEVER MADE A WORTHY SAILOR!
User avatar
tripper76
Hero
Hero
 
Posts: 316
Joined: August 6th, 2009, 8:00 pm

Re: Man I was doing so good

Sponsor

Sponsor
 

Next

Return to The Support Group

Who is online

Users browsing this forum: No registered users and 7 guests