Hi! Hope this helps someone. (Bart1 post)

Information about how to manage or reduce the severity of BFS symptoms

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Hi! Hope this helps someone. (Bart1 post)

Postby GBH3 on September 30th, 2014, 4:13 pm

Hi everyone,
I can't seem to find Bart1's post from earlier today about his awesome visit with his Neuro. Can someone put the link in below this entry? Thanks in advance.

I should preface this post with the following; I'm new to the site as of today although I've been a frequent reader. There are some folks on this site that have given me a great deal of comfort without even knowing it, literally they helped me climb out of some of the darkest moments in my life and for that I am so grateful.

My abbreviated story; I'm a 30 year old male, lovely wife, 3 y/o daughter in Ohio. I had a super stressful April/May, we bought our first house, we had some family issues, work was stressful, I had just turned 30 etc etc. I heard an interview with someone on the radio in mid-May that had been diagnosed with and MND, oddly enough I had that irrational fear about a year before after seeing a similar story but my fear quickly passed (not this time). As strange as this may seem, almost suddenly I started have anxiety that I had an MND even without obvious symptoms. Then I began to notice twitching (probably always there). I then did some digging on good ole google and sure enough, my goose was cooked. I couldn't eat, sleep, focus, ANYTHING! My arms went numb and tingled (not a symptom of ***, I've come to learn), I was in 24/7 terrified panic mode. So, it's late May and I'm in the deep. the twitching came on strong and has only gotten stronger, head to toe, thumpers, invisible twitches, buzzing, fast twitches, slow twitches, hand tremors, moving thumb, ear drum twitches, face, head, back, lower back, abdomen, arches of feet, hands, thighs, shins, calves, forearms, butt, neck, toes, triceps, biceps... can anyone else dig this! LOL!

May 27th I was A MESS. I walked the length of my living room, back and forth from 11pm to 7am (no joke) until I could call my GP at 7a. I got in that day. He did some quick tests and told me that he thought I was a "healthy guy that psyched himself out". BUT, he would send me to a Neurologist to be sure. I waited two days, May 29th(which made me more nervous, I thought that they got me in quickly for a reason...). My Neuro was awesome, he did the clinical exam and asked questions about my symptoms and LISTENED. He talked me off the ledge and said, that he felt very strongly that I was healthy when he walked in and I began to talk to him and he was very confident after the clinical. He said that when someone comes in that DOES have an MND he can generally tell right away and as that person is talking to him about symptoms he is thinking of what he is going to say next. He said the majority of cases that report fasciculations are benign and mine were just that in his opinion. That said, he would send me for an EMG to put my fears to rest, he made me promise that once the EMG came back (assuming it was clean) I would have to let this *** fear go. (sorry I just realized this is going to be long as hell). On June 10th I got the EMG and NCN test, both came back clear. The Neuro (different than my first) was also great. When it was complete she said, "you don't have ***" and I replied with, "I unequivocally don't have it?" She laughed and said, "unequivocally". I left feeling like I had a new lease on life. The previous 3 weeks were awful, I had gone so far as to try to control my emotions putting my daughter to bed, showing my wife how I paid the bills and what dates so she could do it when I was gone, I talked to my boss about possibly leaving, cried to my parents etc, I was out of my mind with fear. This news set me free from all of that.

But...... My twitching increased in more areas with more frequency. Despite everything I just had done, two Neuro's both with 15+ years of experience (one of which is a Director of Neurology) with the Cleveland Clinic, clean clinical, clean EMG, Clean NCN I was back in my dark place, unbelievable... I was so mad at myself in addition to being afraid again. They had to have missed something, they did the tests too early, I have a dent in the top of my right hand they missed, I started myoclonic jerks, one night my lower back was going bananas, I broke down again. I needed to see a shrink, so I did. I needed to cut out booze for a while, so I did. I needed to go to yoga (my wife was floored), so I did. Now we are into July and I'm twitching like a maniac! Straight up, non stop, freaked out. I kept plugging away, trying to get out of the funk but with everything my body was doing I thought this can't be benign. I was self testing and looking at my body over and over, I checked my hands a 1,000 times a day. It got to be August, I needed help. I called my Neuro, I needed to see him again. I got in on August 26th exactly three months after my initial appointment with him. I told him why I was certain I was sick. He walked me through everything again. The twitching is accompanied by weakness with MND. He said think of twitching like an iceberg, (if it presented first, which is incredibly rare) if there was something serious the EMG would have been confirmatory. The clinical is where it is diagnosed, the EMG is confirmatory. AGAIN, according to the Director of Neurology, the Clinical is where it is diagnosed the EMG is confirmatory. I asked him if the EMG was done too early (I didn't have any twitches during EMG, of course :/) his reply; and I quote, "Again, if a person has any symptoms concerning for *** the EMG will detect it. Not a point where it is too early to do the test". "Fasciculations are a sign of on going muscle denervation associated with ***, so weakness and fascics typically go hand in hand". Finally, "I don't think another EMG is warranted in the future. I realize the symptoms you are experiencing concern you, but as we discussed when we did the test there is a certain amount of accepting the results to help get through this". "Your testing and exam were normal". I left that appointment and sat on a bench outside the hospital for a while. I decided that I was going to leave that part of me right there, sitting on that bench.

To be honest, I still have bad moments, that's ok. As I sit here and type this I twitched in my right thumb, my left bicep, my calves are surely bumping along. I'm sure while I have my feet up tonight on the couch my arches will pop now and again. But I can truly say in 4 months I've been all over the place with this and I finally see the light. My twitches have decreased slightly (which I don't think happens with MND, not sure though) and my myoclonic jerks aren't as frequent (still have them just not as much). I've been proactive to reduce anxiety, I've stopped researching the internet apart from this site and the facebook page (BFS-Benign Fasciculation Syndrome), I don't drink coffee, I still drink beer and wine from time to time but not as much. Melatonin helps me sleep if I need it, stretching, deep breathing, tea at night etc. A lot of this stuff (yoga, tea) is NOT typical me at all, I love the Brown's, I love beer, I love a good time, bad language etc. LOL! All that said, I want to feel better. My take is this BFS thing isn't something to get through, it's something to be okay with it. I urge you to trust your doctors, if they give you the all clear believe it!
GBH3
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Re: Hi! Hope this helps someone. (Bart1 post)

Postby LKP1231 on September 30th, 2014, 4:31 pm

This is a helpful post! My emg is Thursday and I'm only 7 weeks into this. The ALS ice bucket challenge was a constant reminder of my husband who passed from the disease 8 years ago. It really started getting to me and -boom - twitches all over. He absolutely did not start that way but here I am. I'm hoping for good results and then I can begin to recover myself.
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Re: Hi! Hope this helps someone. (Bart1 post)

Postby GBH3 on October 1st, 2014, 6:16 am

I realize the Bart1 post I was talking about was from 2008. Not sure how I mixed that up.
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Re: Hi! Hope this helps someone. (Bart1 post)

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