Good Cop....Bad Cop.

[veryworried123]

ghayes wow what an amazing post

its basically what so many people feel like on here...love everything you said

i actually said to my nero "great so ive been twitching for 4 months non-stop and i all you have to say is relax"

how are you doing these days...are things better?

[Ghayes420]

Hello! Wow, it's been a while since I have been in here! Thank you for the nice compliment. I am still alive and kicking. I still battle with BFS but without the fear that nearly tore my life apart. Hopefully everyone else will realize with time that this is a big annoyance and nothing else. 32 months and counting.

[veryworried123]

i actually started to write something like you did then found your post and said "this guy nailed it". i deleted all my notes as you stated it wonderfully and with passion

this has been one of the most difficult things ive ever had to work through in my life. its driving my *beep* nuts

sounds like you had better neros that anyone else ive ever met...and despite all that it just shows you how strong and hard this *beep* can be to overcome

are you still twitching? if so how much?

any tips on how to handle this for rookies

[shell67]

I have to say that, Greg, that I read your posts from beginning to end, and your story and Mario's were the ones that have offered me the most comfort. I had my husband read some of them so that he could understand just what BFS can do to one's psyche. I was never, ever anxious before I got BFS. It has rocked my confidence in my ability to "read" my body, if that makes sense. I used to believe I knew when something was wrong with me. Suddenly, I questioned everything. Is this normal? Is that normal? And that has been the hardest part of this condition for me -- accepting that the symptoms will not lead to something sinister down the road -- if not "our friend, Al", then some mysterious disorder that hasn't been named yet. It is really, really comforting to read how you guys got thrown off course and then found your center again. Congratulations. What a journey.

Yes, I'd love to know if you still battle with the mental part of this syndrome and how you handle it. I find for that for myself I have to throw myself completely into things I love and not spend too much time on-line. Also, I read a lot of spiritual books and exercise -- helps me stay positive.

Thanks again,

Michele

[Ghayes420]

Thank you veryworried and Michelle for the nice compliments. It is good to see that my writings that were originally intended for me to blow off steam have actually help a few people on their journeys. Welcome to the world of BFS and I am sorry that you have been both scared and worried. This is normal and this fear does a good job specifically it seems on those who are intelligent and have access to the internet.

To answer a few of your questions about myself...yes I still twitch all over my body all day everyday. It doesn't stop and hasn't for a single day in the past 32 months. Every muscle in my body has been affected in some way. I still get plenty of other symptoms beyond twitching. Sensory stuff, pains, numbness, you name it, I get it all. I am not bragging here but I put myself in the top 5% of BFS folks on this site with regards to sx. I can count on maybe one hand a few others on this forum that have had this intensity for this long. I have had fasciculations found on an EMG in upper and lower limbs. I don't think you will find very many other stories if any of anyone having a fibrillation on their EMG either. (open challenge to other BFS folks)

I really let BFS destroy my life to the point where I did hit rock bottom and almost lost my wife and kids as a result. It took me hitting rock bottom to finally coming to grasps with this condition, I don't encourage you to follow me on that path.

I can tell you what worked for me. However I also don't feel comfortable in recommending this approach for every person. After I wrote the above article in October 2012 I again ended back at the neuro in early November and late December seeing the same expert, Dr. Miller at Forbes Norris ALS/MND research center in San Fran. On the last visit after yet another EMG (which ironically was completely silent) he had a long talk with me. It really hit home but I had already had one final neuro visit scheduled with the Mayo Clinic in Rochester, MN. That experience at Mayo was eye-opening and sealed the deal for me.
I am one of those pricks who goes straight to the best specialists possible if there is even a hint of anything wrong with me. In my opinion, between my original neuro, UCSF, Forbes Norris and Mayo, I had no where else to go. I had reached the top of the neurology mountain. I came armed to Mayo with many questions and asked them to all three neurologists I met with. My EMG picked up fascics in upper and lower limbs (no fibrillations). They looked at the morphology of the fascics themselves and ruled them as totally benign. I specifically asked the question..."Look, I understand that I don't have ALS currently and that I am NO WHERE near even close to an ALS dx, but I want to know if this is the beginning of ALS, like a precursor before the weakness and everything else bad." She plainly said. "No it is not. While I cannot guarantee that you or anyone else will not get ALS in your lifetime, this is not a set-up for something to appear in the next few years." This was enough for me. I also got to read my several reports from Forbes Norris which were sent to Mayo and she let me read them. I felt foolish to the point of embarrassment.
Quotes on those reports like. "Mr Hayes is a healthy young male. He feels he has ALS or the start of ALS. Mr. Hayes does not have any form of Motor Neuron Disease." "We found three fibrillations in Mr. Hayes' left bicep on EMG. Mr. Hayes feels as though this is a sign of ALS. Mr. Hayes is incorrect and exhibits no signs of motor neuron disease."
I should actually post these reports sometime. Since that time in Feb 2013, I have not been to a neurologist and dont' really want to either.

You ask if I still have fear and I have my moments. I am not completely and totally done with the fear, it creeps back maybe once every couple months for a few minutes but I do well at beating the fear quickly. Nothing at all like before. I get satisfaction in helping others with this condition and continue to do so on the the BFS facebook page mostly. This is a great starting point here on this site, but there is a flood of both information and plenty of mis-information as well. So, in short, my five steps for beating the fear of BFS are in no particular order...

1.) Go find a really good neuro. If you don't like what you hear and aren't satisfied, go find another. Put your full faith into this person.
2.) get the hell off the internet and away from here
3.) throw yourself into a hobby or something else to take up your time.
4.) go have drinks with johnnythejet
5.) try to eat well with whole foods and exercise consistently.

Again, no particular order.

Hope this helps a bit on your journey and feel free to PM me with any questions.

[jerseygirl]

Greg, thank you for your recent post. I have having a bit of a setback but fighting it to the end since I, too, don't want to go back to where I was. Thanks again

[ShawnW]

I appreciate your story and frustration. I'm also thinking this guy must have terrific health insurance...lol.

[Ghayes420]

"This guy" has a standard Blue Cross/Blue Shield PPO through my employer. Each visit cost me $20. The three day Mayo visit cost $40.
However I would have paid full price for all services for the peace of mind I received. As I mentioned, this approach isn't recommended for everyone.
G

[johnnythejet]

4.) go have drinks with johnnythejet

Haha cheers, bro. Those were good times and hopefully we can do it again soon.
On another, note its great to see you giving feedback on your experience. Even though you path was extremely painful and drawn out, your outlook and experience provides enormous hope and inspiration to newbies. Thanks for posting!

[chrissi]

Yes, your anxiety story still is my favourite one:) That was a deep valley you went through, and everytime I hear from you I am happy that it turned out that way:)