3.5 year update @ the Mayo Clinic

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3.5 year update @ the Mayo Clinic

Postby Ghayes420 on January 16th, 2015, 9:44 am

Hi ladies and gents. I just wanted to give you an update on my condition and some reassuring words from the Mayo Clinic main campus in Rochester, MN.

I had an awesome visit with two of the best doctors you can imagine. I was seen by Dr. Lyle Jones, who is one of the neuromuscular specialists at Mayo. He won the Henry W Woltman Award which recognizes superior performance in the field of clinical neurology. He exceeded all my expectations. Here are a few notes from what he said:

- It is exceedingly rare for a MND patient to present to him with fasciculations. Most MND patients present with weakness and atrophy and he has to point out the fasciculations to the patient himself. He feels bad in doing so, because then the patient begins to feel and notice these twitches AFTER he has brought them to their attention.

- Mayo invented the EMG and the give the EMG as standard operating procedure. However, he feels comfortable ruling out MND via clinical with 99% certainty in most all cases. He noted that 99% is not good enough for many people and so he will send these people for an EMG to be 100% sure.

- EMG was actually first implemented at the Mayo clinic. It is very operator dependent. False positives can happen often. (as we have seen cases of here) False negatives however are exceedingly rare and not seen at the Mayo Clinic due to their extensive training and the fact that EMG's are only performed by actual neurologists.

- Dr. Jones sees people for fasciculations regularly. There are over 2000 doctors at the Mayo Clinic. The people he sees the most that present with fasciculations are OTHER DOCTORS AT MAYO.

- Dr. Jones claims (and this made me feel good) that he has seen "the most stone-cold strong willed and confident people get consumed with fear to the point it ruined their lives" due to constant fasciculations.

- Dr. Jones claims that the human body has multiple fasciculations per day on a regular basis. He said that it is when our 'internal dial' is turned up that we notice all these twitches. Some individuals have more fasciculations that others.

Now concerning my case...My clinical was spotless as I suspected it would be. I have no weakness that I can notice so I didn't expect him to find any. I squeezed and closed my eyes hard and he was able to visibly see fascicualtions in both eyes. My neck started thumping and I showed him and it was observed. He grabbed the light and also saw two fascics on my right arm that I could not feel at all. After a battery of tests he ruled me as 99% sure that I did not have any sign of MND. He sent me for EMG to relieve my fears and give me the 100% stamp.

Later in the day I arrived for my EMG. This neurologist has been doing EMG's and teaching EMG usage at Mayo for 23 years. After he did a few strength tests he talked to me at length while he was sticking me all over with needles. A few notes from his comments:

-He himself has been consumed with fear after having bouts of head to toe fasciculations of unknown cause or origin. He has had the EMG administered to him by a colleague and he has even given himself an EMG, including in the tongue through his own chin.

- He told me another story about how a neurologist at Mayo was herself consumed in fear as well and was crying on the table as he performed the EMG on her only to find that she too was experiencing benign fasciculations from head to toe. This proves that not only fascics, but the FEAR of the fascics can cripple even the most highly trained and intelligent individuals. In both of these cases, the fasciculations resolved themselves in time.

-He asked me about the cause of my fascics and I told him my several theories. He claims that there is a neurologist in Texas who is studying this phenomenon and is trying to find ways to stop constant fascics through antibodies of the potassium and chloride channels.

- He said that the actual cause of these fasciculations is unknown but he suspects a disruption in chloride, sodium and potassium channels.

At the end of the day, they did indeed find fascics on my EMG, their morphology was normal. I was stuck in 12 places including tongue and trapezius.

You may be saying to yourself, "That's great for you Greg, but I haven't been to the Mayo Clinic." I am here to tell you that I have had EVERY SINGLE SYMPTOM of BFS that you can imagine. I think I passed Chrissi's list of 127 BFS symptoms somewhere in late 2014. I twitch HEAD TO TOE every *beep* day since August 2011. EVERYDAY AND NIGHT. I get no breaks. Not for a single day. (except when I did prednisone for a week). I know maybe two people on this forum who twitch as much or more than I do. So, if you use logic, then you can now say, "Well if Greg has these many fascics and other symptoms and was ruled to not have MND, then there is no way I can have it." Of course don't let that stop you from seeing a professional but myself, just like everyone here before me, are proof positive that the human body can twitch all over everyday and still be considered totally benign.

3.5 years of this and still going. I am just glad that the fear that unfortunately consumed me and my life is over and behind me. Thanks for your support through the years and I will be sure to check in and say hello on my 5 year anniversary, however that anniversary will not need an EMG. :) Listen to SecretAgentMan and others on here on ways to improve your life and live peacefully. I wish I could have learned to apply those theories myself but the unnecessary fear is crippling for some.

Relax, you are fine, just like me.
A very proud fasciculator since 8/14/2011. :)
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Re: 3.5 year update @ the Mayo Clinic

Postby crotwich on January 16th, 2015, 9:57 am

Many thanks Greg, this is a great reassuring post. All the best.
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Re: 3.5 year update @ the Mayo Clinic

Postby garym on January 16th, 2015, 3:04 pm

Ghayes420 wrote: He claims that there is a neurologist in Texas who is studying this phenomenon and is trying to find ways to stop constant fascics through antibodies of the potassium and chloride channels.


Thanks for the great post Greg! also, did he mention the name of the neuro in Texas? I wouldn't be surprised if it is Dr. Shaibani. He does a ton of research on different neurological disorders and told me in 2003 that he believed BFS was the result of a K channel blocker.

Good news all around for you Greg!

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Re: 3.5 year update @ the Mayo Clinic

Postby misterjuanperalta on January 16th, 2015, 4:57 pm

I agree!
Last edited by misterjuanperalta on November 8th, 2015, 8:14 pm, edited 2 times in total.
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Re: 3.5 year update @ the Mayo Clinic

Postby raindog on January 16th, 2015, 5:18 pm

Greg, Best news and post of the year so far. Hope others here will put it all in perspective now and get back to enjoying the better things in life.
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Re: 3.5 year update @ the Mayo Clinic

Postby Little Lost on January 16th, 2015, 8:17 pm

Hee Hee...GREAT POST..

Greg leaped over the gate, his sword held aloft and aflame. To vanquish his enemy the fasciculations, and rescue us all from being dragged into the abyss of fear” ....be gone or risk the wrath of new super charged Mayo boy !!!!!

Seriously though Greg a huge thanks, your posts are always clear, well written, and this one along with Matt's visit to the Mayo, are so so valuable. Its great that some members on this forum have access to such good consultants, and share their experience.

Also glad for you on a personal level that your follow up went so well. You must have gone in to that clinic one person, and left as another.

Hx
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Re: 3.5 year update @ the Mayo Clinic

Postby Ghayes420 on January 17th, 2015, 9:02 am

Thanks everyone for the kind words and yes, I feel like a new man. My wife even noticed as early as last night saying things like, "my baby is back!". I don't want this celebration to end! :)

Gary, you are correct, that was the doctor he mentioned. Supposedly he was working last on a chloride channel antibody that was showing some success. Interesting stuff.
A very proud fasciculator since 8/14/2011. :)
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Re: 3.5 year update @ the Mayo Clinic

Postby Jenna on January 17th, 2015, 9:15 am

Greg, thanks for the great post! This site and posts like this give me strength. I'm new to twitching after burning skin started in September. It's hard not to think, ok what's going to come next after the twitching?? EMG was normal for me. Anyways, thank you for your post and congrats on the outcome of your Mayo visit.
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Re: 3.5 year update @ the Mayo Clinic

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