Long-time Twitcher, First-time Poster

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Long-time Twitcher, First-time Poster

Postby Fasci on July 4th, 2013, 12:54 pm

Hi all. I've been scouring this site for sometime and twitching since 2011 (almost 2 years). If anyone cares to read my story, here it is in a nutshell.

Summer 2011 - Woke up one morning with a horrific calf cramp that almost made me cry. Shortly after, I experienced my first ever twitches in said calf. No pain, just spams that would come and go. I chalked it up to doing P-90X and other similar intense work-outs.

Early 2012 - Calf twitches go away and I forget about ever twitching.

Fall 2012 - Twitches return to lower body, but now they are in both legs & rear end. Basically, everywhere below the belt. I also developed chronic insomnia for the first time in my life during this period.

Jan-Mar 2013 - Twitches continue in lower body, with hotspot twitching returning to left calf (where all the fun started).

Apr 2013 - Twitches spread to uppper body, including face & scalp. Starting to get really concerned.

May 2013 - Experience burning (like a sunburn) on forearms and hands. Icy-hot (Ben-gay) like feeling in abdomen and chest. I now begin to officially FREAK OUT. I consult with Dr. google and am (self-) diagnosed with MS. Burning begins to intensify and I see a Dr. Get a MRI and all is clean - no MS.

June 2013 - Experience my first myoclonic jerks while waking up in the morning. FREAK OUT #2. I am now convinced I have Parkinson's. I see a Neuro - and he diagnoses with BFS. Says my strength is fine (no AL*). He says the jerks are no big deal, since they occur in both hands and feet (not specific to one body part). Confirms my MRI is clear of MS. Schedules me for an EMG (late July) to rule anything else out ... can't wait.

Present - Still freaking out due to Myoclonus jerks and general progression of symptoms from simple localized twitching almost 2 years ago to where I am now. I just hate not knowing where this is going and what new symptoms I'll experience. Also, like many, I still fear the dreaded diseases M*, Park*****'s, and AL*, even though I've been Dx'd with BFS. Waiting on EMG worries me. Also, just going through the EMG makes me uncomfortable, since I'f read they can be painful.

Well, thanks for reading my story. I have read many that have brought me some comfort over the past few months.
Last edited by Fasci on July 5th, 2013, 7:23 am, edited 4 times in total.
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Re: Long-time Twitcher, First-time Poster

Postby donnastar on July 4th, 2013, 5:28 pm

Thanks for sharing your twitching journey, I too get freaked out with any new symptom or increasing twitching. So reassuring to read others with similar experiences. Just had my first EMG last week and it truly isn't too bad at all. I found the electric shocks the most uncomfortable but really only lasted for a second. The baby needles didn't brother me all as I was most interested in seeing how my muscles responded. Good news - normal and I bet yours will be too. I'm still waiting to see a neurologist for the first time as the EMG was performed by neuro physiatrist but he told me believes it is benign.
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Re: Long-time Twitcher, First-time Poster

Postby Fasci on July 4th, 2013, 6:36 pm

Thanks Donnastar. I hope my EMG turns out to be no big deal. Keep us posted on your neuro visit. Best of luck!
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Re: Long-time Twitcher, First-time Poster

Postby TwitchyMark on July 4th, 2013, 9:16 pm

Hi Fasci, your story is very much what I went through. My symptoms differed a bit but the onset and timing are very similar. My symptoms exploded last Fall. I had myoclonic jerks but they were very subtle and didn't really bother me too much. Like little localized muscle shudders. They have disappeared along with the twitches in my upper body (for the most part). I've had 4 EMG's for various reasons. 2 in my left leg for a lumbar disc herniation, 1 in both legs for BFS related stuff and 1 in both arm/hands for cervical disc issues. I found the leg EMG (acupuncture thin needles) and nerve conduction study (varying electric shocks) to be a breeze. I had it done in my arm/hand and found the nerve conduction study there to be more painful in the hand. Also, the needles for the EMG in the hand were more painful simply due to more nerves there. The technician seemed to do a lot more spots in my arms and hands vs. the leg ones. But none of it was really all that bad. More annoying discomfort than pain. In retrospect, I've concluded that my journey with this disorder or malady has been a complete waste of time, piece of mind and money to this point. I've gotten few answers and my neuro doesn't really even seem to care about any of it. I don't even think I will be going back to see her (knock on wood).

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Re: Long-time Twitcher, First-time Poster

Postby Fasci on July 5th, 2013, 7:19 am

Thanks a lot Mark. I appreciate your post and find it very supportive. It's good to hear your experiences with EMGs were not overly uncomfortable. It's also encouraging to hear that your myoclonus has diminished. I hope I can say the same thing soon.
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Re: Long-time Twitcher, First-time Poster

Postby TwitchyMark on July 5th, 2013, 1:01 pm

You're welcome. Trust your brain MRI as far as MS goes. And everything else sounds like BFS 100%. There is even "Benign Myoclonus Syndrome".

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Re: Long-time Twitcher, First-time Poster

Postby Yuliasir on July 6th, 2013, 12:58 am

I'd say good idea is to consider that medical records probably do not know a person to have at once MS, ALS and Parkinson.

Huge variety of symptomes from many disorders together (mildest ones) is usually a sign that you do not have none of them. too many symptomes means that this is rather something else.

and EMG is not a pleaseant procedure but neither a torture session. Not much worse than blood sampling.
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Re: Long-time Twitcher, First-time Poster

Postby muppetdog on July 6th, 2013, 7:23 pm

Twitches continue in lower body, with hotspot twitching returning to left calf (where all the fun started)


Yep, went through that. It seems a lot of people have a predominated side to their symptoms. You must me right handed. A lot of my left calf and foot twitching and left leg buzzing has gone away for the most part. Do you have the buzzing yet? Don't expect it, but don't freak out if you feel like there is a cell phone going off in your foot/leg.

Twitches spread to uppper body, including face & scalp. Starting to get really concerned.


Yep, went through that. It quiets down but might never totally leave for a while. Don't get too tuned to paying attention to every twitch. Some twitching is normal.

You have to kind of laugh when the top of your head twitches.

Experience burning (like a sunburn) on forearms and hands. Icy-hot (Ben-gay) like feeling in abdomen and chest. I now begin to officially FREAK OUT. I consult with Dr. google and am (self-) diagnosed with MS. Burning begins to intensify and I see a Dr. Get a MRI and all is clean - no MS.


Good job on the MS self diagnosis. I did the same thing and yeah, it was not that. The sunburn feeling is something I did get and do get from time to time. Crazy huh, stupid human body!

Experience my first myoclonic jerks while waking up in the morning


Those suck!!! I had them when I would jerk awake when I tried to get to sleep or take a nap for a while. They went away for me. Sometimes I would get them when I was sitting down like someone snuck up on me and kind of poked me with a pencil in the hip or arm or something and I kind of pull away. At first I was like "did that just really happen?" And yeah it did, but oh well. It got better for me. By the way, I'm 20 months with symptoms.

I also developed chronic insomnia for the first time in my life during this period


This was one of my first problems and has just now started to iron itself out. I had to go the sleeping pill route for a while and be pretty religious about when I went to bed and calming myself down before bed. I usually would not have that much trouble going to sleep, but would then get up every 2 hours and have to try to get back to sleep. Or, I would get up at 4 in the morning and that was it, no more sleep. If it happens now a days I can usually read myself back to sleep after I have sorted out what irrational through woke me up in the first place. I get about 7 - 9 hours now. Make sure sleep is a priority for you. It has the power to ether heal or really mess you up.

I was doing the P90X stuff before all this started, also. I don't think it had anything to do with it but, who knows.

Good luck
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Re: Long-time Twitcher, First-time Poster

Postby Fasci on July 7th, 2013, 9:35 am

m-dog:

Thanks so much for your line-by-line comparison. It definitely helps to know my symptoms are not totally unique.

I would say the sleep-start jerks are the worst thing for me now. Like you, I wake up around 4 am every morning feeling totally alert - believe it or not, this is better sleep than what I was getting last summer. When I do wake up at 4, I lay there and try to fall back to sleep. It's at this point that I notice the jerks the most (wrists, fingers, ankles, mouth-area). I don't even need to be drifting back to sleep.

Maybe we're on to something and can blame all of this on Tony Horton (lol).

Thanks again for your post.
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Re: Long-time Twitcher, First-time Poster

Postby muppetdog on July 7th, 2013, 12:59 pm

Yeah,

maybe ol' Tony can come out with a BFS Blaster 110. "Guaranteed to make you twitch for years."
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Re: Long-time Twitcher, First-time Poster

Postby Fasci on July 18th, 2013, 9:05 pm

Just had my EMG and nerve conductancy test today. Everything was normal. The tests were not nearly as bad as I expected. My neuro was really good about telling me what to expect and when to expect it.

Thanks to everyone on this board who's given me encouragement between my initial consult and today.

My next step is to have a sleep study this weekend to try to address my insomnia. My neuro thinks there's a direct relationship between my sleep and my BFS.
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Re: Long-time Twitcher, First-time Poster

Postby johnnythejet on July 18th, 2013, 9:50 pm

Fasci wrote:My next step is to have a sleep study this weekend to try to address my insomnia. My neuro thinks there's a direct relationship between my sleep and my BFS.

Add sleep to the 1 of 1000 things that could affect BFS. Just promise yourself that you won't be too upset when you find out fixing insomnia doesn't fix your BFS. For the vast majority of BFS cases, we already know there is no silver bullet cure for the symptoms. Not sleep, not diet, not medication, not hydration, not .........and the list keeps on going. Newbies don't like to accept that, but its the truth based years and years of feedback from long term twitchers who check back after years of symptoms. Try not to put too much energy into "fixing" your BFS, or it can become an obsession that overtakes your life.
Thanks for sharing your story.
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Re: Long-time Twitcher, First-time Poster

Postby Fasci on July 19th, 2013, 9:12 am

Thanks Johnny.

I don't expect a silver bullet fix, but even if my sleep is totally unrelated to BFS, I would gladly accept any improvements to my inability to sleep more than 5 to 6 hours a night.
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Re: Long-time Twitcher, First-time Poster

Postby johnnythejet on July 19th, 2013, 9:25 am

Fasci wrote:Thanks Johnny.

I don't expect a silver bullet fix, but even if my sleep is totally unrelated to BFS, I would gladly accept any improvements to my inability to sleep more than 5 to 6 hours a night.

Haha, I completely understand that. I did a sleep study years back because my snoring was so bad, and I was waking up every 20-30 minutes throughout the night. Then I started sleeping on my side, and not eating or drinking anything past 7pm. All better!
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Re: Long-time Twitcher, First-time Poster

Postby muppetdog on July 19th, 2013, 11:27 am

I know that back when all this started I was getting hammered on sleep. I would only get 4 - 6 hours and was a zombie, twitchy, sore, foggy mess. I did the whole sleep study thing and found nothing, which surprised me. It's differently worth doing, though. If you find something and are able to sleep more then 5-6 hours, you will really notice the difference. Your twitching may not totally go away, but they might.

I had to use all the Sleep Hygiene tips and tricks to better my sleep. I can't eat too late or sleep on my back ether. I also had to go on Lunesta. It took about a year to get my sleep back on track, but now I sleep 7-9 hours and feel a lot better. When I don't get sleep, or I do get sleep and it's all broken up - you feel like you tossed and turned all night - then I feel like crap and my symptoms get way worse.

Bottom line is, make sleep a priority and it can take a long time to get it back on track. its frustrating.

Good luck on your sleep study
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