Fighting back the fear

[KERRI]

Hi guys,
I have not posted in a while, I thought I was doing better but I am so not. I have been so scared for so long, I do not think I can take anymore. I feel like I am in a daze, this is just not happening. I have had this twitching on and off, sometimes severe sometimes not. I do not know what to do anymore. I simply cannot believe this is benign, buzzing vibrating, twitching.

16 months, at this point I thought I would be okay, I just feel crazy completely crazy.


Kerri

[Pole]

Read your own post on braintalk, please.

[KERRI]

I have read it, but the fact of the matter is, you said it yourself, some doctors do not see or know of BFS.

I have a hard time believing in BFS.

Kerri

[Pole]

This doctor which I talked to know what is BFS (and suggests that's propably my condition) but haven't seen any case of BFS. That is because she is not a "first contact neuro". She works in specialistic hospital and her patients are told by their regular neuros that something is wrong and they need to be consulted by a specialist (and she is this specialist).

BFS is not her job. Her job are serious motor neuron diseases.

Kerri, think for a moment. Take a look at you in a mirror. Think that all is happening for 16 months. And try to answer yourself do you really think that you have ALS.
Do you look like somebody with ALS? Do you have ALS symptoms? Do you have any abnormality in any of you numerous exams?

All answers are NO!
So you have NO ALS!

regards
Marcin

[KERRI]

This is my final word, I cannot stop.

I am sick......

mentally, physically, i am obsessed.

Kerri

[Greata]

Kerri,

I have a friend with ALS. He did not start twitching until after the weakness was apparent on his left side. For example he could not get up water skiing, struggled to lift his kid with that arm {40 pounds}, weight lifting was very uneven etc. It has been 15 months since this started, he is noticeably ill. ALS travels fast.
If you have been twitching for 16 months, have no weakness, clean exams, {which his never were}. You are fine. Face it, benign twitcing is enough of an annoyance to stress you out...don't make it a serious illness. Of all people on this forum, you have had so many tests, start believing the results. I found exercise is great as well as NO seafood. My twitching is 80% better 3 months later. Believe me I have shared your fear, but I am learning to deal with this condition, and amazingly it is starting to go away!!! Go figure.
Regards,
Greata

[KERRI]

Kerri,

I have a friend with ALS. He did not start twitching until after the weakness was apparent on his left side. For example he could not get up water skiing, struggled to lift his kid with that arm {40 pounds}, weight lifting was very uneven etc. It has been 15 months since this started, he is noticeably ill. ALS travels fast.
If you have been twitching for 16 months, have no weakness, clean exams, {which his never were}. You are fine. Face it, benign twitcing is enough of an annoyance to stress you out...don't make it a serious illness. Of all people on this forum, you have had so many tests, start believing the results. I found exercise is great as well as NO seafood. My twitching is 80% better 3 months later. Believe me I have shared your fear, but I am learning to deal with this condition, and amazingly it is starting to go away!!! Go figure.
Regards,
Greata

Hey Greata,
How long have you been dealing with this.

Kerri

[Pole]

Kerri,

do you think sometimes about your baby? Or maybe you can think about yourself only?

If you really love your baby (do you?) you should imedietelly contact your doc and tell him about all this what is happening with you.

DO IT FOR YOUR BABY. DON'T BE SO SELFISH !

M>

[Greata]

I have been dealing with this for almost 4 months. I realize that is no where near 16 months, however, it has been very stressful. I, like you, have had a lot of tests, including 2 EMG', 2 MRI's and many reflex,strength, balance exams etc. My MRI's revealed 2 questionable lesions, and I have to have them redone in 6 months. He was hopeful that I do not have MS, but could not rule it out 100%. The twiching of course is completely unrelated, and he has NO clue why I twitch. He just calls it a benign condition. Never has he called it BFS. I think there are varying degrees of BFS. Some people have a lot of pain and cramping. I do not, thank God.
Mine started in my calves and spread to my entire body by the end of the day. As of 10 days ago, things have really mellowed, like I might twitch noticeably 5 times per day. I also have much less buzzing and fibrillations. I tend to have hot spots on my right tricep and left hamstring.
The point I was trying to make to you is that you definitelty have a problem.. I do not undermine the stressful and annoying aspect of BFS, but I promise it is not ALS. I think what scares ALL of us is the possibility that all of this twitching may just be a prelude to what we can expect in 3, 5, 10 or even 20 years. I do not think BFS has been around long enough to rule out the possibilty of it evolving into something down the road.
You sound healthy right now, if you {or I} are predisposed to some disgusting disease, what the heck can we really do about it? If you really want to freak yourself out {do not do this} read about all of the cancers out there...I work in the medical industry , I see very sick people {mainly cancer victims} every day. It is so sad and hard not get afraid of the endless disease possibilities. SO..you and I need to forget all of this and focus on what we like to do. I have a great kid, husband, sports, friends travel etc...A little or alot of twitching is not going to ruin all of this.
Hope this helps.

Greata

[dwl]

I think what scares ALL of us is the possibility that all of this twitching may just be a prelude to what we can expect in 3, 5, 10 or even 20 years. I do not think BFS has been around long enough to rule out the possibilty of it evolving into something down the road.

I disagree - there is ample evidence that BFS does not turn into anything more serious. For example, the Mayo clinic paper. Conversely, there is also a lack of evidence that BFS does turn into anything more serious.

David

[KERRI]

I think what scares ALL of us is the possibility that all of this twitching may just be a prelude to what we can expect in 3, 5, 10 or even 20 years. I do not think BFS has been around long enough to rule out the possibilty of it evolving into something down the road.

I disagree - there is ample evidence that BFS does not turn into anything more serious. For example, the Mayo clinic paper. Conversely, there is also a lack of evidence that BFS does turn into anything more serious.

David

I am confused, she said she feels fibrillations, I thought they could not be felt.

There is not much evidence of BFS turning into anything else, only one case in 1986, and the guy did not have an emg done so that is doubtful.

I just wish I new what was ahead of me.

Kerri

[garym]

Kerri,

I can definitely relate to what you are going through, just as many others here can as well. I've only been going through this for a few months, and it has been hell.

I don't think you are being selfish or anything like that, you're just sick with fear. I too can relate to that, but you have to find a way to get past the fear. I have a wife (yesterday was my 4th anniversary) and a 15 month old baby girl. This has been tough on them, but when were together I feel my best. In the beginning, that was the opposite. I would look at them and think about what I was going to miss out on. Now I managed to change that to the perspective of what wonderful things I have to enjoy now.

I've also come to the realization that if what I have is something dreadful, there isn't much that can be done about it. For that reason, I try to live every day and have decided to leave the rest to God. Don't get me wrong, I still have very bad days, but I'm getting a little better one day at a time.

In my opinion, you need to focus on the positives in your life. Look at the beauty and love and happiness in the world around. Make the decision that you are going to be happy, regardless of the twitching. Find whatever it is out there that gives you the will to fight the fear, and stand up and fight. I do it for the love i have for my wife and child. I fight this for them. They have the right and the need for a happy and normal husband/father, and I'm going to do everything I can to give that to them. I'm also tired of not living the life that was mine before all this started. Stand up and fight, you can win!

I'm sorry for being so long winded, but I can feel you pain as it is mine and so many others here. I hope that you can find a reason to fight back, whatever that may be. I'm certainly pulling for you, and I know it has been a long process for you. Don't give up.

Gary

[SusanSid]

Kerri,

I don't recall all the details of your past with BFS at this moment, but know that you are a regular on this board. First, if you are in an emotionally bad spot (which is obvious) do see your doctor. The fear of BFS is the least of your concerns. First, living in the fear is not healthy, and I agree as stated earlier, it isn't good for your baby either.

I don't want to get personal, you don't have to share this, but if you aren't on an anti-anxiety or anti-depressant, think about it. It can make a HUGE difference is how you see life. It can be life saving, emotionally. This would enable you to start seeing things in a realistic manner. Also, consider a good therapist. Statistics show that a combination of medication and therapy is much more effective than medication alone.

I also have moments where I think that my symptoms are different from everyone elses. That what I feel is not what others feel, that I have something more serious blah blah blah. It's negative thinking and gets me nowhere other than in a panic. I think that BFS is frustrating. We all have various degrees of it, but we all have it. I have had it 2 years next month, and I know you've had it a long time too. If it were ALS, you would have significant weakness, and you wouldn't be on this website wondering if it's benign or not. In other words you'd have more serious things to worry about.

Get some help Kerri, really. Life can be hard, but it doesn't have to be this painful. Enjoy it.

Take care,
Sue

FEAR is FALSE EVIDENSE APPEARING REAL

[sarahtonin]

Kerri

I agree with Sue's post re therapist. I started to see one after driving my family crazy with my health paranoia. It gives you someone to tell everything too - your fears about your health, how it affects your family etc. without having to worry about upsetting them.

My therapist actually laughs about my twitches - sometimes I laugh too, sometimes I really don't appreciate it but in general it helps. I go because this fear is bigger than me, and it's not fair on my family for them to see what I'm doing to myself. It is probably breaking your husband's heart to see you like this.

Hope you're feeling better soon.

Sarahx

[Greata]

David,
I am NOT saying that I believe BFS will turn into someting serious later. However, everyone in this forum has genuine fear...why? Most{ if not all} of us know we do not have ALS. We may have a benign twiching condition called BFS or we may just be twitchy anxious types; either way, we are not terminally ill. So why are we so afraid? I believe it is because we have no clue what the future holds. You can call this standard hypochondriac behavior or human nature. Some peole are just more preoccupied with their health than others. Some people obsess about things, others do not.
BFS may never turn into anything...great. I twich too. Not as much as I used to, but it is still there. The last thing I want is to find out BFS is a precursor to some serious illness. I hope this clarifies my position.
Thanks,


Greata