Twitching Since 2011: My Story

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antman

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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 MS, Parkinson's, and ALS, 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.
 
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.
 
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).Mark
 
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.
 
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". Mark
 
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.
 
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.
 
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.
 
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.
 
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
 
Got my initial sleep study results today. I found out I have severe Obstructive Sleep Apnea and some instances of Central Sleep Apnea. I have to go back and have a second study with a CPAP/ BiPAP machine. I'm concerned about getting this Dx, given how messed up my sleep has been over the past year, but at least the study may be uncovering my underlying issue. Not saying it is the main driver of my BFS, but it can only help my overall health if I can get some relief from a PAP machine. Of course I also read where central apnea can be associated with AL#. I don't want to read too much into this, and keep my faith in my EMG and conductance results.Thanks again for those who've provided their perspective and support.
 
I do have to say my symptoms are much worse on nights that I don't sleep. I have also struggled with insomnia for years and have been a frequent user of Ambien. Now I only take it once in a while, and take Simply Sleep for about half the week (which is benadryl).I have always wondered if there is a correlation to my horrible sleep and twitching. I have always had horrible sleep, and have always had eyelid twitching, for instance.But, like Johnny said, don't expect anything to rid you of BFS. If you are successful through more sleep, or a different diet, that's fantastic, but don't expect it to happen. I have tried everything under the sun the past two years and nothing seems to get rid of it completely. My symptoms totally wax and wane.Mitra
 
good news is that central apnea is not unique for MND and happens independently for many reasons, and they are practically part of normal qiuck sleep phase at absolutely healthy people (and they often occur at falling asleep, practically people who can not get asleep because of very 'thin' inital sleep, most probably have episodes of central apnoe). Stressful conditions change blood gases level and this can messup your breathing center operation. Usually if the person is othervise healthy it is a result of some chronic hyperventialtion during non-sleep period (active phase of the day).You may know that hyperventilation is our common symptom. So there i very high probability that your central apnoe episodes are caused by instable CO2 level and therefore instable operation of your breathing centre. as I said.People with MND may have specific form of central apnea, caused not by external factors but by destructive processes in the brain stem. usually their episodes are so severe that they require not PAP but active forced ventialtion.
 
Thanks Yuliasr. I was not aware of that. I'm not sure about hyperventilation in my case. I don't think I hyperventilate, but maybe it's not something that is as noticeable as it sounds. I do appreciate your insight, as it is often very scientific and more information than I received even from my neuro.
 
thanks for good words;)I'm trying to keep scientific approach as much as I can because it really explains a lot in our condition.another trick is that we often think we need to work hard or run or gasp intentinally to get hyperventialtion.Nope. If you ever had experienced bad tightness in the chest like you can not breath deep enough and have to yawn once and again and still can not reach a point of satisfaction - it is hyperventialtion. Tingled fingertips, numb mouth zone - it is a symptom of hyperventialtion. Moreover, it would be enough for you to be nervous before the sleeping study, breath a bit more frequently but not deeply (it is called tachipnoe, fast breathing) - and boom! yu get your central episodes on the equipment.Practically stress is about a main reason for hyperventialtion syndrome (other big is a CHF, but I assume you do not have it). People with acidosis (like those who have uncompensated and untreated diabetes) may also hyperventilate in order to alkalise their blood, but i also suppose that is not your case.So most frequently it takes a form of tingling, dizziness, persistent (and bloody exhausting) yawning but neither kills nor causes too much deterioration.
 

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