Trying to keep the chin up...

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Trying to keep the chin up...

Postby Ghayes420 on June 26th, 2012, 9:24 am

Hello twitching friends. I don't like to report this but I feel like I am approaching the end of the line for me mentally. Granted my rope is much shorter than most of the kind people here, but the symptom progression along with the constantly new symptoms is going to end me up in the ward if I cannot get a handle on this. Just to recap so you can see how flawed my thinking is....

Neuro #1 (neuromuscular specialist) = "Greg appears to have benign fasciculation syndrome."

Neuro #2 (ALS specialist, top universtity) = "I concur it is BFS, lets repeat the EMG in one year to be sure. I think your chances are 1 in 10,000,000 of seeing a change."

Neuro #3 (ALS sepcialist, top in field) = "Greg, this is NOT ALS. I guarantee it. I will put it in writing." (I have that via email btw).

Add to the above, Clean EMG 8/31/2011. Clean EMG 5/22/2012. "Normal" EMG 6/13/2012 (some fascics and 'benign' fibrillations?)

So CLEARLY, based on the above I would have to be literally insane and off the rocker in order for me to think that I have some rare neurological illness.

HOWEVER, just listen to what is happening to me and if somebody could comment on these symptoms, I would really appreciate it.....

You may recall the saga that was my twitching left bicep. It went non-stop for a full month. Well, it stopped. Thats good, however two things have started now. The fascics have moved down the limb and into my forearm and hand area now. They are quite strong fascics and almost feel like tiny electrical jolts. Basically like the 'popcorn' style twitching that I continue to get all over my body, but slightly more intense. The part that is sending my head into outer space is that now EVERY NIGHT, I wake and ONLY my left hand is numb and sometimes just dead. Its does NOT matter how I sleep, there is clearly an irritation of the nerve in that arm.

So my clearly irrational thought process is telling me, 'you have fasciculations in that arm contonously and all over in the limb, and now your limb is falling asleep constantly. This must be something awful.'

From a mental standpoint, this has now started to affect the normal day to day operations of my life here. Therapy isnt working, meds dont do anything, alcohol masks the pain but my liver needs its rest. I really am trying to keep my chin up here and be a 'honey badger' but I am not sure how much that my pea sized brain can handle. It surely feels like I am at the limit. Thanks for listening to another nervous twitcher spill his fears. (I hate these kind of posts) :?

Greg
Last edited by Ghayes420 on July 2nd, 2012, 7:48 pm, edited 2 times in total.
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Re: Trying to keep the chin up...

Postby volfan on June 26th, 2012, 9:34 am

Greg, my beloved friend, I think I have told you that I, too, have the numbness. Almost always it is in my left hand. I do have it in the right sometimes as well and you will recall one time I emailed you completely freaked out because the entire left side of my face was numb. I had never had that and strangely I have not had that part of me go numb since that time. BUT...my left hand absolutely. The other night when I woke up, it was so dead (and turned downward) that it took quite some time to even be able to start to wake it up. I confided in Leanne that this just freaked me out because it just would NOT respond to my shaking it, etc. for what seemed like an eon. I get what you are saying. And I'm sending you a huge cyber hug. Vickster
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Re: Trying to keep the chin up...

Postby KatieMG on June 26th, 2012, 9:53 am

Greg you are okay. Keep reading the quotes from your doctor. What you are experiencing is purely sensory BFS stuff and nothing bad. I hope you can move past this soon and enjoy your life every day.
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Re: Trying to keep the chin up...

Postby Yuliasir on June 26th, 2012, 10:01 am

KatieMG wrote:Greg you are okay. Keep reading the quotes from your doctor. What you are experiencing is purely sensory BFS stuff and nothing bad. I hope you can move past this soon and enjoy your life every day.

or maybe there is a circulatory issue .
I had that - very persistent and unpleasant stuff, unilateral transient numbness of my upper limb and leg. took a hell of some drugs assumed to improve microcirculation in my brain - and it helped.

anyway should that be a MND, it would not be intermittent night only condition and you know that muscles are dead in that kind of diseases - once and forever...
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Re: Trying to keep the chin up...

Postby mwagner on June 26th, 2012, 11:03 am

Oh Greg, my friend, I'm so worried about you. I'm 100% positive you only have BFS. The numbness thing in your arm and hand is nothing new at all on this board. Heck, Matt had it a while back - and probably still does - talk to him about it. Just search for it, you'll see it all over the place here... I just read a post a day or two ago, with someone who had numb hands upon awakening. It's very common.

BUT, I know how psychologically taxing this is for you. I can relate to you because the minute my symptoms change in any way, I freak out and end up ignoring all the advice on this board, as well as my clean EMG last year, the fact that I'm relatively young, the fact that I have gone almost a year with this, etc. And until that symptoms subsides, I live with fear and doubts again. So, you are not alone at all.

Honestly, I would suggest therapy, but having a master's in psychology, I know that you would have to find the most experienced therapist in your area with health anxiety. Someone who is a superhero in that area. And look at you - you have managed to find the top &LS specialists all over the place. I think you could do the same research and find the best darned therapist who works with health anxiety in your area. Otherwise, it may not help, and that's hard for someone who is a huge advocate of therapy to say. Most of us have health anxiety (mine is AWFUL - I have a 5 month, follow-up mammogram today for the biopsy I had in January, and I had to take a xanax last night because I am so afraid). But, we not only have health anxiety, we have a combination of 1) very weird, uncontrollable symptoms, and 2) the fact those symptoms are associated to the most horrible disease imaginable. This makes us in a class of our own. It takes health anxiety and perpetuates it to a level that is unique and hard to treat with any sort of reason and logic.

My other advice to you would be to consider medication for the time being. Go talk to a very experienced psychiatrist. I know you're anti-meds, and so am I (I refuse to go on an SSRI). You might needs some sort of temporary, extended release of a benzo that you can take on a daily basis. You could manage this without running into addiction, withdrawals, etc.

The reason I'm suggesting this, is I think your anxiety is what is going to get you in the long run. You could get high blood pressure, etc., that WILL be harmful to your body. I know how important your family is to you, and you have to figure out something, or a combination of things to get yourself calm again.

Lastly - maybe you need to stop weighlifting for a while. I know that sounds unhealthy, but give your muscles a rest. Focus on cardio instead for a short period of time. I know when I exercise (and I only do cardio) it aggravates my twitching. But, twitching is a common side-effect of muscle exertion for people without BFS. Give it a rest for two weeks, see if it makes these hotspots go away. I don't know how often you work out, but I think it's fairly often. Just a thought.

Feel free to ignore my advice, Greg. I am just worried about you. You and I have gone down this journey at pretty much the same time and I really want you to be okay.

Mitra
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Re: Trying to keep the chin up...

Postby Wells05 on June 26th, 2012, 11:22 am

Greg,
I can feel your pain through your writing! Greg if anyone understands its definatly me! I can't get past this! The everyday reminders of these weird things are just not normal. I will tell you that for the last 3 years I have had BFS and now I look back and Im like wow I really did have a benign condition. BUT now I feel my symptoms are just not normal, like im just about to be diagnosed with something. I have allot of twitching in my left arm like your describe, to me it seems there is a nerve issue in my entire left arm. NO WEAKNESS! not only my left arm but my right foot is a constant reminder, THERE IS SOMETHING NOT OK HERE!. Is all I can say is I COMPLETELY understand how you are feeling 100%! I know your fears, worries, concerns as I feel the same way! But how do we get past this! I mean what is the answer? Where is my breaking point? I turned 30 last week, and I started to think to myself if Im worrying at 30 where will I be when I turn 40 mentally! I can't keep living in fear of dieing! I have decided to definatly get help for my own sanity!
I have never been one on here to just say OH YOU HAVE BFS! I think what we all have is unique and it may be many reasons why we have this. And we may never know why we have this! What we have may be benign but to us its not because its an everyday reminder of SOMETHING SO WEIRD happening on our body! Im just babbling but one thing I want you to know Greg is I think the world of you. I respect you and I want you to know im here for you! Ash :D
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Re: Trying to keep the chin up...

Postby bobajojo on June 26th, 2012, 1:07 pm

Greg,
IMO, these symptoms you describe are in the "mild" category of BFS. Your anxiety, however, is extreme. You can't get any more reassurance than what you have had. Expert after expert has told you the same thing. Your "new" symptoms are classic BFS. The only way for you to get out of this vicious cycle is to attack the real problem. You say therapy doesn't work. OK, try something else. Diet, meds, mindfulness, CBT, whatever its going to take for you to put an end to your biggest problem. You are caught in a whirlwind of anxiety Greg. Its up to you to find the way out. -Matt
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Re: Trying to keep the chin up...

Postby acct on June 26th, 2012, 1:30 pm

Greg,

I certainly understand what you describe. It is logic vs emotion. The logic tells you what the experts do but your emotions goes off of what you feel. It doesn't feel normal as you know it so it must be bad. That is the cycle i go through. I have come to this point --Is the only way i'm going to get past this to get rid of it? If so, i am going to be battling for a long time. From what i have experienced, it is going to move, it is going to be different, and it is going to come and go while moving. Those who have gotten past that know that it all goes like this. I haven't been able to master this either, so don't feel bad.

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Re: Trying to keep the chin up...

Postby chrissi on June 26th, 2012, 2:49 pm

Well Greg....how can I get some sanity into you??? I mean, you have heard the bad case BFS stories....people not able to walk properly because of stifness and trembling, constantly twitching in that same one leg, not able to lift their arms because they were too sore, and-of course.CONSTANTLY FALLING ASLEEP LIMBS. Come on, that symptom is as old as BFS . You know what buddy? THAT ARM IS SCREWED UP. Likw my right arm, like Robynns left foot, like many many twitchers that have one limb especially beaten by BFS. I tell U be glad that you only have the twitching and falling asleep....that arm could also be constantly vibrating, shaking bad and be in HORREND pain that brings tears to your eyes. And this would still be BFS normal. Extreme stiffness, feeling of that hand slowed down, jolting wrists and fingers..still BFS....So what. It is BFS, not ALS. You said if that one neuro the best top specialist clears U and U still have doubts, you would have to see someone for your anxiety. So PLEASE see a therapist that can help you to deal with your OBVIOUS obsession of ALS. Not Meds, I am talking about working on it, not just hoping for some magic pill to cure U.
You have had the possibility to have the widest range of top specialists to check you for ALS, you dont have it. You totally have to stop looking for reassurance, you have had the biggest possible amount of medical reassurance of ALL MEMBERS on this forum I think. It is time to stop being a victim of BFS and start being a fighter Greg. Step by step forward. And NOT backwards like in the last months. You have to. Because we cannot give U what U need, a doctor cannot give U what U need, you have to find it within U. But therefore U have to search for it and not to try to numb up your brain with alcohol and pills.
I am afraid my friend that -if U don't get control over this- something really bad will happen.
For my personal opinion I see you borderline to going to a very very very dark place. And all our attempts to hold you back fail. You can achieve control over your mind, you CAN, but you must decide to do so and face your problems. Otherwise I think this will end bad. Seriously.
"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: Trying to keep the chin up...

Postby Issi on June 26th, 2012, 4:16 pm

Greg,
I am a newbee and maybe my words do not mean so much to you. I am six months in this crap now and I have a lot of symptoms (almost like Chrissi and Leanne). My left hand is fallen asleep almost every morning I wake up. Especially the pain and excercise intolerance hits me a lot but I am now at a point to accept that whatever this may be it will not kill me. At the beginning I couldn`t trust the doctors as well and I have seen specialists. I still have very bad days, cause to me it seems that somebody pulled me out of my old body and put me into a new one. I am sure there will be days I will have an anxious feeling but I try to move forward, step by step. ALS is a rare disease and even if your symptoms worry u just try to give your body a chance to relax. By the way my GP used to say "When you hear hoofbeats, think horses, not zebras.” Your body is able to send signals which are very frightening although they are benign. Go and try to find somebody who can help you to find your peace of mind.

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Re: Trying to keep the chin up...

Postby Shanny63 on June 26th, 2012, 5:20 pm

Hi Greg, I'm so sorry honey that your doing it tough at the moment, what can I say to help you? Please get help..I know bfs is a total mind *beep*..I know that every new symptom, twitch, buzz whatever can put us back to day one..but you have had some of the best people in the world reassure u..and multiple EMG's...u are fine...this stupid twitching and numbness is nothing..my left hand is numb fairly often in the morning...it's all just sensory crap...please don't let bfs and anxiety beat u my friend.... :( ...stay strong ok...and u are a great honey badger.... :wink: ..hugs shanny
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Re: Trying to keep the chin up...

Postby Ghayes420 on June 26th, 2012, 6:38 pm

Thank you all very much for taking the time to reply on my thread. I really hated going into this forum and ready stories of totally spooked and nervous twitchers and here I stand at 10 months, still scared little a caged bunny rabbit. Typing the exact thing I hate to read.

I agree with every single post written above. I am a very self aware person, and I realize that the anxiety of this benign condition is taking a toll on me both psysically and mentally. I too am worried where this is going to lead mentally. I was doing a bit of therapy, but never really thought it helped or was worth the $300/month. Maybe I will reconsider. My blood pressure it hovering steadily around 140/98, which for me and anyone is high.

I do find it a bit strange when a few people still think my symptoms are mild. I get vibrations in this arm, tremoring when postured, shoulder pain, deep muscle pain in the bicep, etc. etc. Twitching in all muscles everyday for 10 months, not one day break. I think I can count on one hand the people I know that I think exceed my symptom profile. So while my fear of ALS is unjustified and not grounded in fact or statistics, the worry about these ever incresing symptoms and what it will do to me phsyically also concerns me.

And again, the fact I dont KNOW why, meaning I have NO CONTROL, is what my mind does not like. My neuro actually warned me of this. He said as an engineer, you are going to keep searching why, and you wont find it. You see, in my household I am the 'rock', I have to be there to make things work for our family correctly. Without going into detail, lets just say I do a lot. I am very well respected in my profession as well and do quite well. But, when I have this happening, I feel helpless and not like the strong father, dad, and employee that I want to be. Can a therapist teach you to let go of CONTROL? If yes, maybe I will try again, but I have never been successful with prescription medications or therapists.

I am not going to seek reasssuracnce from doctors anymore because there really is nothing they can tell me now that I dont already know. I have been reassured by many many kind members on this forum several times. Its to the point now that most these kind members are growing quite tired of my obvious phobia. So places to go get reassurance are pretty saturated, therefore as you all point out, this now turns to an internal battle of my own.

Just know that I do want to be in a better place. I want to get back to helping others with this condition so that they can gain positive knowledge. I want to be a good dad to my kids and a solid member of this community and my own local community in both philanthopy and ALS awareness. So I do have goals, I just need to find a clearer path to get there, because clearly this path is not working.

Thank you all very much for your concern and understanding and allowing me a moment to vent. Just knowing that there are others who understand is comforting in itself. I thank you guys from the bottom of my heart, I truly do. I am very glad to see others have found peace with this, even in more extreme cases than myself. This gives me goals to reach toward. Thanks again.
Greg
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Re: Trying to keep the chin up...

Postby mike fla on June 26th, 2012, 9:04 pm

Greg,

One of the things that helped me when I was going through the many tough times of BFS and GERD/ Gastritus was I tried to still find things in my life that made me happy or that I could be positive about. At its worth I might not have been the worst twitcher but I had really bad pain in both my legs and in my abdomen. To me the abdomen was the scary thing and it was soo bad that I could barely ear. Despite that, I would look at instances where I still found enjoyment or when my symptoms were not quite as bad. For instance, one evening I went over to a friends house and actually had a really good time (and did not think about my health issues at all). I also looked at other people who seemed to be doing worse than I am (not just with BFS but other diseases) and thought well things could be worse. I spent alot of time on reflecting personally about my life and what this disorder meant to me. I also worked with a psychotherapist to help with that introspection. Maybe that is something that can help you. Try to find anything (even if it is not a major item) that you can be positive about or gain enjoyment from (kids, family, friends). I also agree with you on the doctor front that they are not very good at helping people with BFS. I know that you are a different person and maybe this will not help you like it did me, but its worth a shot right?

Mike
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Re: Trying to keep the chin up...

Postby wjjw on June 26th, 2012, 9:23 pm

I'm still trying to figure out how to respond to this post ... the only logical thought I'm entertaining at this point is driving out there and experimenting with my Vulcan Mind Meld technique to try to reel you back into reality. It's a scary thought, but I don't know how many more of these posts I can take from you buddy...

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Trying to keep the chin up...

Postby Ghayes420 on June 26th, 2012, 10:21 pm

I cringed at the thought of you or Johnny reading this.

Can you please advise if the Vulcan Mind Meld technique is easier or harder on your liver than the 'plainslady juice'. Because Grey Goose, Sea salt and Tonic is just making a small dent on the core problem here.
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Re: Trying to keep the chin up...

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