My (very) reassuring and (hopefully) last neuro check-up.

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My (very) reassuring and (hopefully) last neuro check-up.

Postby Ghayes420 on July 27th, 2012, 4:26 pm

Hello Fellow Twitchers! I believe I have reached the end of my 'neuro' rope. I have made the pilgrimage to who I believe (strictly my opinion) is the best ALS specialist in the United States. There are many great hosptials in this country. Harvard, Cleveland Clinic, Mayo Clinics, UCSF, UCLA, Washington Universtity, etc, etc. But instead of a hospital, I sought a certain doctor in particular. We will call him Dr. M. This guy has seen it all and has over 30+years of clinical experince in treating, diagnosing, and researching cures for ALS and other neurological conditions. Several famous cases of ALS have flown to see this doctor. Most recently, Steven Gleason from the New Orleans Saints. All my other neurologists mentioned his name. I had to wait some time to see him myself but I am glad that I did.

Many people have grown tired (or tired of hearing) about my neurology consultations that I have been to up to this point and have expressed frustration about ressurance seeking behaviors, and that is ok. However I still feel very strongly that this journey is a personal one, and what ever you need to do in order to believe that you are ok and don't have some strange rare illness, then by all means I encourage it.

In my particular case, it took four neuros, three of which are ALS specialists along with three EMG studies all within a year. What can I say? I have a hard time trusting people? I guess that, on top of the fact that my symptoms seem more intense than 95% of the BFS cases I read. (I am coming dangerously close to completeing Chrissi's list.)

During this visit I actually saw two neuros, both who specialize in ALS, the one I have seen previously and then Dr. M. They each did seperate clinical exams that were different. They each came to the same conclusion, "you dont have ALS. Not even a hint of it." I did not press or ask for an EMG, because honsetly, I am just now realizing, an EMG really isnt needed. Unless you have a deficit on your clinical exam, there is no point. What is it going to do for you? To me personally, the words of Dr. M were more reassuring than any form of diagnostic testing.

When I met him I told him that I had one question for him. I have to admit, he was very impressed. I dont want to cause a stir with posting my exact question, but it was to the effect..."I have read several odd cases studies, what makes me different than them?". His reply was, "Wow, that is an excellent question, one of the best yet, you have really done your homework. Let me exam you first and then I will answer that."

The exam consisted of every test done before. Lots of him starring at me too. Also doing actual strength tests like pushups and squats. He listened to my symptoms and story, the whole thing, reveiwed the previous EMG studies and came to a simple conclusion.

"you have benign fasciculatory syndrome. You dont have a single hint of ALS. I have seen thousands of ALS cases in 30 years and I have also seen thousands of cases of BFS. I have been wrong one time in 30 years. You are not that guy and these people with BFS dx'd by me do NOT go on to develop ALS. You are in that category. Your symptoms do not sound like ALS type symptoms. The pain and sensory you describe is not what is decribed by ALS patients. The chances of anyone developing ALS in their lifetime is 1 in 1000. I put your odds at closer to 1 in 10,000 or roughly the same odds as you dying on the way home from here."

I asked him about the severity of my symptoms vs others with BFS. He said "that he has seen the entire spectrum of BFS. All the way from the nervous few-times-a-day twitcher to people fluttering away and even cramping in front of them in the office during exam."

He feels that anxiety is absolutely NOT the cause of the twithcing but greatly influences the twitching to different degrees. And the anxiety produced because of the twitching DOES however produce symptoms that are unrelated to the twitching itself. Thus creating a viscious cycle that must be broken. They have absolutely no idea as to the actual cause of BFS itself and they (both docs) dont think that they will in their lifetime.

Somebody who is very knowledgable on neurological matters, but not a doctor, once said to me in a chat room..."Having BFS increases your chances of having a neurological illness the same way that being obese and smoking increases your chances of getting a heart attack." His answer was, " I could not DISAGREE with you more."

I won't forget his question posed to me. "What will it take for you to believe, Greg, that you do NOT have ALS? And what can I do to help convince you that you dont have ALS?" I basically told him I am at the end of my rope and that his opinion was the last part of my journey. He said that I am welcome to come back whenever I felt necessary, but that he wanted my visit with him to mark the beginging of the end of my worrying. After spending the good part of 30-40 minutes with me, he stood up and gave me and my wife a hug and we were sent on our way.

With the completion of this visit, I feel that although logically I cannot explain my symptoms or provide any relief to them and logically I cannot explain why my symptoms seem progressive and so severe, there is one piece of logic that makes sense....

I have seen the very best specialist money can buy in this country IMO. Logic now tells me that I would have to be literally mentally unstable, approaching paranoia, if I cannot believe what the leading specialist in our great nation is saying to me. Therefore I am going to now try to deal with this from a different angle and perspective and going to try and reduce the overall stress in my life through whatever methods avaiable. I realize that this fight is not over. I am surely going to have a few more "oh s**t" moments, but I will come back to my thoughts of this visit when it happens.

I wanted to thank everyone here for allowing me to vent and listen to my story as I have struggled through this...often putting up with anxiety fueled moments of panic and despair. I feel that my knowledge of BFS has come full circle and I hope that others can have peace of mind as well someday too. Thanks for Aaron and Gary for helping create and make this forum. Special thanks to MommyLondon for starting up the chat room and providing that outlet for recovery.

Have a great twitchy day and wish everyone the best of luck in dealing with this benign but very aggravating and often frustrating condition.

Greg
Last edited by Ghayes420 on July 27th, 2012, 8:49 pm, edited 1 time in total.
A very proud fasciculator since 8/14/2011. :)
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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby raindog on July 27th, 2012, 6:08 pm

Image

:mrgreen:
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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby Shanny63 on July 27th, 2012, 6:09 pm

hi greg, great post, and u know i say, whatever it takes for u to find peace is your own personal choice...i know some people find peace with this after their local dr says its benign while others of us search longer... :lol: i know ive been on this crazy bfs ride for 16 months now...some days im at peace with what my neuro says and my local dr...other days i still question...but that is my journey and your journey is different like all of us are different....

im so happy that u saw a really good neuro and i hope it brings u peace my friend, because i do know your struggles....best wishes shanny
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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby Yuliasir on July 28th, 2012, 12:20 am

Hi Greg, great news, and I have admit that doctor asked you the very right question - what it takes to believe this is not a deadly ilness. Sometimes the fear of being deadly ill becomes precious for us - and the reasons might be very personal and different in each case, but without being of great value, this fear would not obsess us longer that half in hour or one day or so - not for years. We usually keep it because it means something important for us. Something we could not reach in other way that being in fears (if fact we can, but that other way has to be found, and most of us can found it).
So I wish you good journey out of the precious castle of fears, down to the great valley of life :))). Let the river flow...
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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby jerry2 on July 29th, 2012, 6:35 am

Thanx Greg for sharing your post with us from a smaller country that doesn't have ALS specialist who has seen 1000 of ALS patients...

As you remember me surely, we once found out our symptoms are very close and I do not fit into the pure BFS category either but more in a BFS/sensory/pain category :-( I hope I can get some peace of mind off your story also. I wish you a good recovery, you deserve it much!

See you!
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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby mwagner on July 29th, 2012, 11:09 am

I'm so happy for you Greg!! I'm hoping this will do the trick and you won't have any doubts anymore. I'm so glad you were able to see someone who is one of the best specialists in the country. You couldn't get better validation. Hope you celebrated a lot this weekend.

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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby Kev74 on July 29th, 2012, 11:14 am

Thanks for posting Greg, these sort of posts help to reassure the rest of us. Your doctor sounds very knowledgeable and caring, however I would disagree with him on one point about anxiety causing BFS. I get the feeling hes making that statement as an opinion and not as a fact. I've trolled many anxiety forums and twitching comes up quiet alot. Too often to be a coincidence. I believe anxiety can over stimulate the nervous system and cause it to misbehave. This might not be true for all BFS but my own opinion is it can definitely be true for some.
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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby jerry2 on July 29th, 2012, 3:03 pm

Well, about anxiety. If this is true that my doctor told me a lot of ALS patients family comes to see him because of twitching and that medical students twitch when they come to learn about ALS, then twitching could be also pure anxiety.
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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby mwagner on July 30th, 2012, 6:20 pm

Has anyone thought that perhaps anxiety contributes to our symptoms (or perhaps even causes them) - because we tense our muscles while anxious? That's why benzos are so helpful with our symptoms.

Basically, for all of us who twitch - we can tense a muscle (on purpose) and then we'll see twitching. For many people even without BFS - weight lifting can induce twitching. It's out there as a common symptom on weight lifting forums. For many of us who are anxious, we probably constantly tense up our muscles. Maybe years and years of having tense muscles eventually makes our muscles twitch like they do. And then, because of our google searches, we are even more stressed and tense, and it makes it even worse. Ultimately, it gets better when the anxiety lessens.

I don't know, just a thought!

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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby johnnythejet on July 31st, 2012, 3:10 pm

Thanks for the update, Greg. It sounds like this latest doc acknowledges everything he should know and everything we already knew. I truly hope you can trust this one and move on. Yes, you will have setbacks and thats okay. Just keep moving in the right direction by reducing your overall stress....good plan of attack. Best of luck, buddy!
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Re: My (very) reassuring and (hopefully) last neuro check-up.

Postby jerseygirl on August 3rd, 2012, 9:37 am

Greg thank you for sharing. I am still struggling with acceptance. I too saw many neuros and have nowhere left to turn. Had the clean EMG, etc. but everyday something new pops up. . . literally. Last few days, I have had this very feint fluttering above my ankle on my dominant side and that sinking evil feeling creeps right back in. About to go on vacation and so sad that this will put such a damper on what should be a great week with my family. I can't wait to get to the point you are at. . .if it ever happens. 8 months into this crap. I am so happy for you and others that have been able to move on. God bless and thanks again for sharing.
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Re: My (very) reassuring and (hopefully) last neuro check-up.

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