Experiencing Muscle Twitches and Pain

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J

johnsoncarter

Well-known member
Hy guys,

I have been experiencing fasiculations,intermittent painful paraesthesias as well as occasional myoclonic jerks throughout my body and face for the past twelve days. I would appreciate feedback on the following.

1) These symptoms dissipate entirely when I am moving around and engage in any physical activities. However, when I sit on a specific sofa in my home or am resting on my bed the symptoms return. But when I am driving in my car, eating or engaged in certain distracting activities I do not experience any symptoms. Is this pattern a usual occurence?

2) I have been experiencing occasional twitches and myoclonic jerking movements around the mouth area. Is this a symptom that is associated with this disorder?

3) I realize that without clinical/objective (versus not perceived) evidence of weakness and atrophy a diagnosis of ALS is very unusual. Any statistics on this?

4) There appears to be a fatiguing factor involved with this disorder as well as feelings of demoralization. I am wondering if the fact that we cannot control and terminate these symptoms is contributing to these emotional feelings!

5) Are there any posters on this forum who did not seek out an evaluation by a Neurologist or had an EMG regarding these symptoms and are satisfied with the knowledge that they MAY be dealing with a benign condition?

Thanks, Carl
 
I think that if any of us were okay with it being benign, we wouldn't be on this site. I know with me anyway, that I always think of the "what if it's this or that scenario". It's my opinion that this site gives a lot of reassurance. Everyone gets occasional random twithes - I haven't spoken with anyone who hasn't had them at some point in life. Most folks on this site have them frequently and when they happen frequently, you can't help but think about them. I think I would be a lot better in handling them if they didn't happen on my face so often.

I agree that I don't feel them as often when engaging in activities. I should clarify as well that as time goes on, I am sure more and more people on this site deal with it and stay on to help others. I am 4 months into this and still find that I am convincing myself that I'm okay.
 
I think that if any of us were okay with it being benign, we wouldn't be on this site. I know with me anyway, that I always think of the "what if it's this or that scenario". It's my opinion that this site gives a lot of reassurance. Everyone gets occasional random twithes - I haven't spoken with anyone who hasn't had them at some point in life. Most folks on this site have them frequently and when they happen frequently, you can't help but think about them. I think I would be a lot better in handling them if they didn't happen on my face so often.
 
Boy, you're brooking no tangents on this thread, eh? ;)

I have not had an emg, just a cursory evaluation from a neurologist. I wouldn't even have gone, except that the appointment had already been made. I am completely satisfied with my dx of bfs, and am not worried about any of the nasty diseases.

Regarding your question number 1. I believe it is quite normal to notice the jerking, twitching, and tremoring more, when at rest. It is certainly the case for me.

Basso
 
I have had two neuro appointments and one emg. The first neuro did the clinical exam - said he wanted to see me in 4 months - said it was BFS. Once I googled BFS, freaked out, went to a second neuro for an EMG and exam.

My personality is one that I need the comfort of a benign diagnosis. It's also important to note that I had no idea what was happening when I went to the first neuro. I explained to the Neuro that I felt this pulsating on the sides of my face. I was dealing with the twitches for two months but didn't know that this site existed - never even came across the term BFS. I thought I was having tremors. Steve's website pnhe.info is exactly what I was going through, but my normal docs had no idea what I was saying.

If I had found this site before my first Neuro appointment, I still would have gone to the Neuro.
 
I can answer a few points here...

Your description of the twitches only being noticed during resting is EXACTLY what I get. Also the facial/mouth twitches which are most unpleasant.

I live in the UK and went to see my doctor - she ran me through a test for strength and gave me a good examination also did a few blood tests. I did not see a neuro and did not have an EMG.

This might sound crazy to some on here, but my doctor declared in benign and my symptoms were so matched to others on this site that I didn't go any further with it. Hand on heart I was probably too scared!

6 months on and with the awful anxiety behind me I am barely twitching. Have a good read of BFS in a Nutshell - that pretty much sums up everything

43RichyThe43rd
 
Basso, thanks for your well thought out and helpful posting. You are right on target! I am concerned due to the constellation of symptoms I have previously noted as well as the divergence of medical opinions as to their possible implications. I agree that the fasiculations and related symptoms are most probably innocuous medically although annonying and intrusive to one's quality of life. However, due to my recent medical history (including a misdiagnosis of pancreatic cancer three years ago that aged me twenty years) I am wondering if there is any association between the recent onset of BFS and my previous symptoms (ie, lightheadedness, dizziness, feelings of faint, etc)! It is also in my thinking that I had those neurological consults over a year ago and the question arises whether these same physicians would view these new fasiculation symptoms as a separate entity or as part of a constellation of symptoms that may result in an integrated diagnosis. Carl
 
Carl,

Go back and read your posts and try to figure out why ANYONE would ever respond to one of your posts again. This is a help board that is "staffed" by amateurs who are drawn together by a common syndrome. It's pretty incredible to me that you pick fights and belittle long time posters who voluntarily respond to your questions because you don't like the answers.

Do you speak to people live like you post? Or is it fun to hide behind the anonymity of the internet? Either way, you should find somewhere else to vent your personal frustrations. I've found the people on this board to be incredbily helpful, selfless in the time they give up, honest to a fault, as knowledgeable as non-professionals can be and yes, funny.

There are plenty of places on the internet that you can post about your condition. Why not go elsewhere? OK, go ahead and flame back. it appears to be what you do best.
 
Dear Carl,
May I ask you, why you are even on a bfs board?

If you read "bfs in a nutshell," it doesn't mention anything about having hypotension or blood pressure dysregulation. I'm confused as to why you would expect us to be able to help you with that?

If I were doing a point-by-point comparison of my symptoms to a "syndrome" that I found on a website or message board, I would certainly not be encouraged if my worst issue wasn't listed as part of that particular malady. I would have to go elsewhere to try to research my entire constellation of symptoms.

Have you tried an endocrinologist? A cardiologist? A vascular specialist? And why were you taking klonopin (and weaning off of it) if no-one ever found anything wrong with you? (OK I'm editing to add here that I've read your prior posts and see that this was prescribed for sleep, so I retract this question.)

It was as if you pulled a bait-and-switch on us. You initially described yourself as one of us, then you threw the curve-ball of the low blood pressure into the mix. Then, when you didn't get the reaction you were desiring, you seemed disappointed in us.

I'm not sure what you wanted us to say? Or do? No, we don't have hypotension, though some of us have become dizzy and faint for other reasons.

We can help you with bfs, if that is what you have, but we surely can't be very useful for helping you to stabilize your blood pressure. Frustrating as this all must be for you, I'm afraid there is no excuse for being belligerent and lashing out at the fine people on this board.

In other words, it seems you are not only barking up the wrong tree, but p-issing on it at the same time. :LOL:

Nonetheless, as one who has suffered from misdiagnosis and the medical mystery tour myself, I wish you well, and hope you find answers soon.

Blessings,
Sue
 
Oh...so in answer to your original question, NO, I would not be satisfied with the presumption of having a benign condition if I were in your shoes, and would have told you so, had I been made privy to the full extent of your suffering from your initial post on this thread. The precarious fluctuations of your blood pressure as you've described have somewhat disqualified this as "benign," at least for the time being.

I must say, if I HAD been the unfortunate soul who attempted to reach out to you when you first posted, I would have answered similarly to those who did extend themselves in such a fashion.

No one can help you satisfactorily if you don't present the entire clinical picture. Perhaps this explains why you aren't getting very far with your physicians. You can't fault your doctor for not examining your sore throat when you've only told him about your sprained ankle. :rolleyes:

I'm not sure where you live, but you might want to consider going to a major university medical center, (like Mayo or HUP,) where multiple specialists can come together to try and solve exactly what is going on here.

It is rather odd that you have suffered this long with your blood pressure and haven't been placed on any sort of regimen to control it. Have you had a tilt test? A holter monitor? Stress testing? Blood work? What makes you so certain it is all because of the klonopin?

BFS can be a lone syndrome, but as we are all aware, fascics can have multiple etiologies and you have to eliminate all of the possible suspects before settling upon a benign diagnosis. Sometimes, this is as simple as having an unimpressive neuro exam, but in your case, I would say there are more complex considerations. This is NOT to say that it is anything sinister or untreatable, only that it might not be just plain old garden-variety bfs.

I do hope this helps.

Blessings,
Sue
 
LisaLM:Dear Carl, May I ask you, why you are even on a bfs board?

Carl: Because I recently experienced fasciuclations that appear to be benign. However, that remains to be determined.

LisaLM: If you read "bfs in a nutshell," it doesn't mention anything about having hypotension or blood pressure dysregulation. I'm confused as to why you would expect us to be able to help you with that?

Carl: In fact I never stated that I expected anyone on this forum to assist me with hypotension and am confused as to your arriving at this conclusion! In my initial posts I noted that I began to experience fasiculations and presented a synopsis of my recent medical history and symptoms so that one poster, Zeke, could have a frame of reference for my current symtoms. I was also attempting to determine whether I should continue to pursue a more definitive diagnosis or to be satisfied with accepting my current symptoms as being separate from the others.

In fact the ONLY reason I mentioned my problem with hypotension was due to a lack of understanding of two posters, (although they had good intentions) that my situation was not merely one of anxiety as they assumed and that could be done away with by engaging in positive thinking BUT a constellation of significant unexplained symptoms with BFS merely being the most recent. That was my motive, no more, no less.

Suzie: If I were doing a point-by-point comparison of my symptoms to a "syndrome" that I found on a website or message board, I would certainly not be encouraged if my worst issue wasn't listed as part of that particular malady. I would have to go elsewhere to try to research my entire constellation of symptoms.

Carl: Once again you are misperceiving what I wrote as well as the facts as they occurred. If you are truly interested in determining what I stated I would suggest rereading ALL of my postings from the beginning and then if you wish asking me questions in a civil manner because quite frankly I have no need to be defensive as to my rationale for coming to this website.

Suzie: Have you tried an endocrinologist? A cardiologist? A vascular specialist? And why were you taking klonopin (and weaning off of it) if no-one ever found anything wrong with you? (OK I'm editing to add here that I've read your prior posts and see that this was prescribed for sleep, so I retract this question.)

Carl: Suzie, please understand that I am not under indictment or on trial and have no need to be defensive as you are coming across as brashly as you alledge I did with other posters. In fact I am just another poster who is facing a significant medical dilemma just as I am certain some other posters on this forum are experiencing. Please respect this fact.

Yes, I have been evaluated by Endocrinologists, several Cardiologists, a Vascular surgeon, Allergists, Dermatologist etc, etc. As you may be aware each specialist will perceive a patient through their diagnostic lens so the Endocrinologist suspected Cushing disease, the Dermatologist and Allergist Pheochromocytoma and Urticaria, the Vascular Surgeon Vasovagal disorder and possibly spinal stenosis, a Gastroenterologist Mastocytosis, a Neurologist Multiple Sclerosis, etc. Getting the picture!

Suzie: It was as if you pulled a bait-and-switch on us. You initially described yourself as one of us, then you threw the curve-ball of the low blood pressure into the mix. Then, when you didn't get the reaction you were desiring, you seemed disappointed in us.

Carl: I see you are into conspiratorial theorizing but I am sorry to disappoint you but this is not the case. I suggest that if you have any concerns as to my intentions or are not clear as to my motives that perhaps you can ask me in a civiel manner rather than to go on the offensive and draw premature and erroneous conclusions!

Suzie: I'm not sure what you wanted us to say? Or do? No, we don't have hypotension, though some of us have become dizzy and faint for other reasons.

Carl: Suzie In fact I do not want you or anyone else to say anything unless you wish to and it was not my intention to have you or any other poster diagnosis or assist me in feeling better. My point to Basso was that advising another poster that they need to smell the roses and think positively (although obviously stated with the best of intentions) without initially asking or being aware of the extent of their medical conditions and the impact it is having on the quality of their lives is not very helpful and inadvertently negates that poster's painful situation.

Suzie: We can help you with bfs, if that is what you have, but we surely can't be very useful for helping you to stabilize your blood pressure. Frustrating as this all must be for you, I'm afraid there is no excuse for being belligerent and lashing out at the fine people on this board.

Carl: Suzie when reveiwing the manner in which you are coming across in this post I can say with certainty that you are not modeling the standards of conduct that you are holding me to. Just an observation.

Suzie: In other words, it seems you are not only barking up the wrong tree, but p-issing on it at the same time. :LOL:

Carl: Yes Suzie you are not beliigerent and lashing out! :rolleyes:

Suzie: Nonetheless, as one who has suffered from misdiagnosis and the medical mystery tour myself, I wish you well, and hope you find answers soon.

Carl: And I wish the same for you.
 
LisaLM: I must say, if I HAD been the unfortunate soul who attempted to reach out to you when you first posted, I would have answered similarly to those who did extend themselves in such a fashion.

No one can help you satisfactorily if you don't present the entire clinical picture. Perhaps this explains why you aren't getting very far with your physicians. You can't fault your doctor for not examining your sore throat when you've only told him about your sprained ankle. :rolleyes:

Carl: Suzie did anyone ever tell you that you tend to draw premature conclusions and opinions prior to obtaining the facts! :rolleyes:

Suzi: I'm not sure where you live, but you might want to consider going to a major university medical center, (like Mayo or HUP,) where multiple specialists can come together to try and solve exactly what is going on here.

Carl: Now you are talking sensibly Suzi :D). In fact I did and what occured was unbeliveable! The Cardiologist who was responsible for the syncope lab believed that I MAY be suffering from a life threatening cardiac condition (this was approximately two years ago) and wished me to undergo a number of tests in addition to the tilt test (I almost lost consciousness during this test) while the Cardiologist and Chief of Echocardiology indicated that my heart was "pristine" and indicated that I should go home and continue to exercise rigorously! He refused to speak with the other physician indicating that she was an alarmist. A total waste of my time because that was my rationale for traveling a far distance to a world class medical center in order to have a team approach to exploring and hopefully arriving at a definitive diagnosis and treatment plan. Such was not the case.

Suzi: It is rather odd that you have suffered this long with your blood pressure and haven't been placed on any sort of regimen to control it. Have you had a tilt test? A holter monitor? Stress testing? Blood work? What makes you so certain it is all because of the klonopin?

Carl: Excellent questions! :) In fact I have had these tests. During the tilt table test my blood pressure fell to 70/40 and I was losing consciousness. However as noted above, contrary to the Director of the Syncope Labs speculation that my life may be endangered the other Cardiologist as indicated that my heart rate did not fall precipitiously and I was never in danger. He indicated that he did not understand what was causing these low blood pressure readings but that they were not dangerous just causing very uncomfortable symptoms (ie, light headedness, dizziness, feelings of faint, etc) and advised me to lay down and elevate my feet anytime I experience these symptoms. In other words Suzi, no treatment regimen, no concern regarding the quality of a patient's life and a total disregard for their psychological well being!

As to the Klonopin I am not certain whether there is a causal relationship with the onset of these symptoms and my tapering from klonopin but it is significant that I experienced these symptoms shortly after discontinuing from this medication.

Suzi: BFS can be a lone syndrome, but as we are all aware, fascics can have multiple etiologies and you have to elimi
nate all of the possible suspects before settling upon a benign diagnosis. Sometimes, this is as simple as having an unimpressive neuro exam, but in your case, I would say there are more complex considerations. This is NOT to say that it is anything sinister or untreatable, only that it might not be just plain old garden-variety bfs.

Carl: Very well stated. In fact Suzi I have recently consulted with a friend who is a Neuropsychologist who works with patients who have ALS and he indicated that I do not show signs of this malignant disorder or any other denervation disease. His opinion, although not a medical doctor, is that my current fasiculations are not connected with the other symptoms, that I display no signs of atrophy or weakness and that he would not recommend my being subjected to EMG and other invasive testing. However, I may pursue another MRI with contrast of that ambiguous lesion or artifact found on my cervical spine prior to concluding that the orgin of my symptoms are indeterminate or inconclusive.

Suzi:I do hope this helps.

Carl: Yes it did help and I thank you for your interest and concern. Carl
 
Carl: ...so in light of the fact that I feel ditsy, er, uhm dizzy, should I be worried?

Carl: Yes, your blood pressure is at a precipitous level...danger, danger, danger.

Carl: Are you saying I'm in danger?

Carl: No, you are fine. You CAN lift ninety-pound dumb bells in each frigging hand. For a sixty years old, you totally rock, and have the biceps to prove it. heh heh

Carl: Yes, I see what you mean. And the lesion on my spine? The docs all think I'm fine, but these concomitant symptoms of bfs make me wonder...who wrote the book of love?

Carl: The book of love? You are digressing, and if there is one thing I can't stand in myself, it is that. Stop it, or there will be no protein drink for you.

Carl: Quite right, sorry...a little bit of humanity slipped in. Terribly careless of me, it won't happen again.

Carl: I thought you were worried that our bfs might be a serious pathology, taking into consideration the plethora of other ailments?

Carl: Yes, I was...am, I think. This is a tough question, but you seem to be getting to the heart of the matter. Thank goodness I know all the answers.

Carl: You're not anxious are you? I couldn't handle that.

Carl: Ha, who me, anxious? That'll be a cold day in hell. But I do suffer, and no one else does, quite like me.

Carl: Yes, this is true. We do seem to have a monopoly there.

Carl: Time for a four mile jog?

Carl: Yes, indubitably, but for God's sake Carl...no stopping to smell the roses this time.

Carl: No daffodil viewing, no smiling?

Carl: No.

Carl: Hug?

Carl: NO!!
 
Carl,
As a long-term poster with a history on this board, I am, of course shaking in my shoes for fear that people will perceive me as the rude one in this exchange, and thus, sully my reputation as a good, sweet and kind person. NOT.

As a nurse, and as a professional, I am used to people taking out their frustration, anger, and fear on others, so I can take it.

Just as a point of interest, the spiritual root of low blood pressure is "giving up on life."

Perhaps it may benefit you to explore that sometime, if you can ever squeeze it past your intellect.

Blessings,
Sue
 
LisaLM, RN, BSN: "Just as a point of interest, the spiritual root of low blood pressure is "giving up on life."

Bill: Oh yeah Miss Smarty Pants … and the root of the spiritual thought is “the God gene.” Are you not up on the latest scientific developments? Read some Hamer or Dawkins for a change. And put that in your bong and smoke it. Just make sure it’s not mine that you’re smoking. ;)
 
"LisaLM: Carl, As a long-term poster with a history on this board, I am, of course shaking in my shoes for fear that people will perceive me as the rude one in this exchange, and thus, sully my reputation as a good, sweet and kind person. NOT.

Carl: Now, now, now Suzi let us not be defensive! You were absolutely coming on as if you were an interrogator and as if I was on trial for some malicious, heinous act or underhanded motive which is obviously not the case. Furthermore you are misperceiving my being straightforward and to the point with being rude, as when I provided strong feedback to one poster who misquoted me and then began his lecture of positivity that was actually relating to his own heightened anxiety and by my respectfully but directly disagreeing with Basso's all-size-fits one philosophy of positivity!

Therefore, this is not a contest or a matter of who is more rude or that your reputation has been sullied (which it obviously has not) but that you in fact did come on like a gang buster! No more, no less.

Suzi: As a nurse, and as a professional, I am used to people taking out their frustration, anger, and fear on others, so I can take it.

Carl: Suzi, you are obviously well intended and very sensitive to the needs of others. In fact I am not taking out any frustration, anger or fear on others BUT do respond straightforwardly to individuals who repetitively lecture anonymous posters in cyberspace about whom they know absolutely nothing about (including their physical and psychological status) that their woes can all be answered by thinking positively when they are not in that persons shoes! No one is contesting the earnesty of such generalized expressions of positivity or the benevolent intentions of the person offering such exhortations, but to a person in cyberspace who may be under inordinate duress, such expressions can be perceived as being dismissive of their circumstances!

Suzi:Just as a pint of interest, the spiritual root of low blood pressure is "giving up on life."

Carl: More than a "point of interest" but a critical issue! In fact when I was misdiagnosed as having pancreatic cancer (in between other questionable diagnosis of Mastocytosis, Pheochromocytoma, Chrohns Disease, etc, etc) a couple of years ago and had to wait for a period of time to obtain the results, I actually went through a traumatic period that may have contributed to my current blood pressure problem. A recent study revealed that men who were misdiagnosed as having prostate cancer but who were subsequently informed did not, continued to be traumatized many years later. So your point is well taken and I appreciate your keen insight.

Suzi; Perhaps it may benefit you to explore that sometime, if you can ever squeeze it past your intellect.

Carl: I have Suzi, many times, and I do appreciate your helpful input in spite of the fact that you may wish to consider entering the legal profession :LOL:

Regards, Carl
 
Hi Carl

I am a recently diagnosed BFS person who had MRI, EMG, etc. I don't know a lot about it yet, but have had similar symptoms to yours.

1) My syptoms are worse in the morning or when I am not doing a physical activity. If I'm sitting on the sofa it's worse than if I'm walking around.

2) I have twitching around my mouth and numbness there also. My eye has twitched for the last 4 weeks, too.

3) I felt like I had muscular weakness, but my neurologist said I didn't. I don't know the statistics about it.

4) My neurologist told me to get a psych evaluation and I know it's not all in my head. I feel like my body is not in my control and it's very depressing. I'm 36.

5) I am trying to be grateful that it's benign, I thought for sure I was dying, but I'm not happy with my evaluation or the lack of real information about this condition. I think we need to demand better care for this condition.

Anyways, I thanks for letting me share. I'm so glad we have this forum to help one another.

Sir_Trouserz
 
Carl
I have seen 28 doctors total from almsot every specialty there is with the accompaning long drawn out medical workup. You know, needles, scans etc etc. Here are my results.
1. BCFS....has a very transient "symptomology"
2. Medication: Klonopin....long term.
3. SSRIs make twitching worse. Respect Klonopins power. Stay on a low dosage for as long as you can. End of story!
4. I get by on .5mg a day


At some point I will also have to come off Klonopin myself. Klonopin probably filled that void your nerve endings can not produce something like "GABA." Anyways, its the best out there right now at least in my case. It's klonopin or suffering. MAKE YOUR CHOICE.

Ask your doctor and good luck!
 

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