My BFS (I hope!) Story - comments/support appreciated!

General Topics

Moderators: JohnV, Arron, garym

My BFS (I hope!) Story - comments/support appreciated!

Postby sgupta on February 11th, 2014, 7:04 pm

Hey all,

My name's Shaun. I'm 33 from northwestern PA (where it's supposed to get down to -10 tonight; Brr!). I wanted to share my experience with you as well as my anxieties/fears, and I certainly appreciated any comments/feedback/support as well.

This whole thing started back in October. I want to say mid-October, as I know it was a while before Halloween, but right now I'm using Halloween as my certainty date as I honestly can't remember for sure. I was standing, cooking dinner, and all of a sudden upper knee/thigh began to twitch noticeably and distractingly. They were quite strong twitches, but I figured I worked out too much (as I use an incline trainer and had been working out quite heavily for 6 months or so). Then I decided to search Google, and like many of you after reading some information, had sudden extreme fears and panic attacks about ALS and other motor neuron disease possibilities (as I've seen similar before, and like I'm sure is the case for a lot of you, it's one of my worst fears).

As the days progressed, the twitching seemed to come and go. I also tied it to some strange feelings I was having. I still can't put a word to it, but I sometimes felt...foggy. I could think/reason/etc. just fine, but something seemed (still does sometimes) different. Also, my hands feel a little different...almost like micro-twitches, and this was actually something I had noticed before the leg twitch, but couldn't really attribute to anything, and it didn't concern me too much at the time.

I'm somewhat OCD, and it took me a few weeks to get a grip on my anxiety. Some articles helped that indicated if there was no weakness, and if moving the muscle caused the twitching to stop, it was unlikely to be ALS, and that brought me comfort.

Since my initial symptoms, I've had periods of less twitching and more twitching. For a while it seemed like it went away completely (or very close to it). I've had twitches in both knees/thighs, both calves, both hands and possibly fingers, my shoulders, my chest, and possibly my right eye (I also have dry eye which can cause a similar sensation, so I'm not 100% certain, but it feels like a twitch to me.) The most prevalent is definitely my knee/upper thighs.

This whole thing led to other obsessions/anxieties, including finding out my blood pressure was a bit high (still prehypertension, but higher than I'd like) and obsessing over that for a while. Through some supplement changes (eliminating stimulants; adding garlic and cayenne), I've improved that, I'm eating pretty well (not a saint but I do try), and I'm exercising regularly.

So the good news is, my lifestyle in general is probably healthier because of this now, and I'm using it as an opportunity to work on addressing my fears and increasing my understanding/empathy for other people who have anxieties, whether it's in regard to health issues or something altogether unrelated. It's also useful in combatting my OCD tendencies in general and working on patience. This is not a fun place to be, but at least I can learn from it moving forward.

In the last few days, my twitching seems to be a bit worse again, and it's been accompanied by some sensations I didn't feel before (including a small amount of numbness/tingling and what I can only describe as an occasional ghost tickle moving through my legs, etc.). This, along with finding a few anecdotal stories of "twitching was first" or "do an EMG test after a year" scared me about ALS all over again, so I'm working to get a grip once again (and doing better this time than the first time, though I'm still pretty anxious).

I guess another fear I've had is that I've done something to prompt this. I've used supplements for several years, including amino acids (though not branched chain ones...mostly arginine in my case), and while I've cut out the majority of those, it's been a worry. I also had therapy for a neck issue last year where they used TENS electrostimulation on me (and I've used it in the past on lower body areas), and that got me a bit scared too, even though any link between ALS and electricity is still sketchy. Another possibility (and this applies to BFS as well) is that overdoing the exercise prompted the condition, as when I first started exercising, as I sometimes do, I overdid it and was going pretty hard 7 days a week (for 6 months or so, with I think only 3 missed days total, and those I was very sick). I found information about overtraining and the possibility of overexciting the central nervous system, and I really think I did manage to do that, which may have prompted this. I took two weeks completely off around Christmas, and now that I'm back into it, I'm exercising 4-5 days a week, never 7 and always at least 2 rest days a week. Additionally, I worry that if I did somehow overexcite my nervous system (via any of the above), I might somehow trigger ALS, but I keep trying to reassure myself BFS is not related and it's more than just overexcitement of the CNS that makes things like ALS do what they do. I also had tried a supplement (slightly different variations) twice to calm my nerves (and hopefully counter any CNS overstimulation), as I was afraid that might have been the cause, but the supplements (both containing theanine) seemed to make the twitching worse, so I discontinued it.

I'm still struggling with my fears of something more serious like ALS or another MND, but here are the good signs from everything I've read:
- My age of 33 and my ethnicity [father was from India] are slightly favorable as far as odds.
- It's approaching 4 months and still no weakness...it's incredibly rare (if even possible; I've read contradictory things) for twitching to be the first symptom, and no weakness for 3+ months would be a good sign I think.
- Fascilations are widespread, and while my one leg seems to do it the most (BFS hot spot?), I think the fact I get some on both sides of the body and completely different areas is in my favor.
- If indeed my eye is twitching, that would be rare for something more serious like ALS as it usually doesn't affect muscles around the eye.
- Sensation doesn't usually accompany ALS twitching, which wouldn't explain the numbness/tingling or ghost tickle I feel.
- If a muscle is twitching and I move it (or touch it), the twitching goes away while I'm moving it at least until that muscle is rested again. (This includes entire bouts of exercising.)
- Finally, if it is BFS, or was prompted by an overexcited central nervous system, this does NOT lead to ALS or motor neuron disease and my statistics are no greater for getting it later in life.

Hopefully I'm correct in all of the above, and any corrections are welcome. I also am talking to my doctor about this and have another appointment the 19th. (Around the time this originally happened, I lost my doctor [who I liked and trusted] and it took me a while to find a new one [who I like but is still very unknown to me], which was another cause of anxiety). My last appointment, the twitching was largely subsided and I was more concerned about blood pressure, but I'll definitely talk to her more in depth this time.

Thanks all for listening and any feedback!
sgupta
Interested
Interested
 
Posts: 12
Joined: February 10th, 2014, 3:05 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby Meled on February 12th, 2014, 4:03 am

I have got the same story

A twitch--->google--->anxiety--->twitches all over my body--->the nightmare
Meled
Senior Member
Senior Member
 
Posts: 65
Joined: January 12th, 2014, 4:30 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby sgupta on February 12th, 2014, 4:58 am

Hang in there, Meled. The anxiety is the worst part, for sure. And if it helps, you're not alone in experiencing these things.
sgupta
Interested
Interested
 
Posts: 12
Joined: February 10th, 2014, 3:05 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby RGB on February 12th, 2014, 12:11 pm

This sounds EXACTLY like BFS. Your physical symptoms and psychiatric history (sorry, that makes you sound like a nut-job but you know what I mean) just scream it. The chances of this being the rarest presentation of an incredibly rare disease are minuscule (divided by a thousand!).

RGB

PS As I'm not a bringer of false-hope then I should probably point out that I am not convinced about the eye argument. I know that ALS usually spares the muscles that CONTROL the eye AND BFS twitches of the muscles AROUND the eye are very common. Having the second kind of twitch (?) is not directly relevant to the first fact though.

PPS This is just me being pedantic (and possibly wrong), I agree with all of your other reasoning and as this is so overwhelmingly not sinister then it changes nothing.
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
RGB
Selfless giver of time
Selfless giver of time
 
Posts: 238
Joined: February 6th, 2013, 1:07 pm

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby sgupta on February 12th, 2014, 5:14 pm

Hi RGB,

Thanks for the supportive post! I agree; logic tells me this is most probably BFS and nothing more sinister, but I'm sure you know how anxieties are even with the smallest of tiny chances it could be something else. That said, as anxiety levels go for me, I'm doing okay at the moment - like anything else, sometimes it's more difficult than other times. For a while (first ALS scare months ago) I just couldn't even step away from the internet to enjoy my favorite TV shows or play a video game or go for a walk or anything without it just taking over my head, but I'm getting stronger at putting it away and doing the things I enjoy. Occasionally I find myself searching or researching, and I let myself...for a little bit...and then I have to tell myself enough's enough, I'm not going to find anything new I haven't already seen, and time to go do something else and get my mind off of it.

Good point about the eye argument...I was never entirely clear if it meant ALS doesn't usually affect eye control, or if a twitchy eye (meaning blink muscles really) were what they were talking about. You may very well be correct. Either way, as you point out, that really changes nothing in regards to the other points. If anything, eye twitches are one of the most common twitches anyone gets (and given my dry eye, I'm not even 100% sure it's a real twitch and not a dryness symptom in this cold, dry winter).

Thanks again for the comments/reassurances!
sgupta
Interested
Interested
 
Posts: 12
Joined: February 10th, 2014, 3:05 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby ShawnW on February 13th, 2014, 6:13 pm

Absolutely nothing about your story says ***...literally nothing. That is one of the more benign presentations presented here. A good neurologist after eliciting a completely normal physical from you wouldn't even do an EMG. Go to your doc to put it to rest but seriously don't lose sleep over it.
ShawnW
Selfless giver of time
Selfless giver of time
 
Posts: 232
Joined: January 8th, 2014, 7:00 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby ShawnW on February 13th, 2014, 6:15 pm

sgupta wrote:Hi RGB,

Thanks for the supportive post! I agree; logic tells me this is most probably BFS and nothing more sinister, but I'm sure you know how anxieties are even with the smallest of tiny chances it could be something else. That said, as anxiety levels go for me, I'm doing okay at the moment - like anything else, sometimes it's more difficult than other times. For a while (first ALS scare months ago) I just couldn't even step away from the internet to enjoy my favorite TV shows or play a video game or go for a walk or anything without it just taking over my head, but I'm getting stronger at putting it away and doing the things I enjoy. Occasionally I find myself searching or researching, and I let myself...for a little bit...and then I have to tell myself enough's enough, I'm not going to find anything new I haven't already seen, and time to go do something else and get my mind off of it.

Good point about the eye argument...I was never entirely clear if it meant ALS doesn't usually affect eye control, or if a twitchy eye (meaning blink muscles really) were what they were talking about. You may very well be correct. Either way, as you point out, that really changes nothing in regards to the other points. If anything, eye twitches are one of the most common twitches anyone gets (and given my dry eye, I'm not even 100% sure it's a real twitch and not a dryness symptom in this cold, dry winter).

Thanks again for the comments/reassurances!


BTW: Hope you are a Steeler fan...would be good to have another here. And if you play PS4, let me know could always play online with another twitcher.
ShawnW
Selfless giver of time
Selfless giver of time
 
Posts: 232
Joined: January 8th, 2014, 7:00 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby sgupta on February 13th, 2014, 11:41 pm

Thanks again for the reassurances; it does make me feel better about things!

Re the Steelers, yes, I always root for them in the SuperBowl anyways. I'm not much of a sports person in general (I'm a nerd lol), but I do generally watch The Big Game, at least. =oP

Don't have a PS4 yet, but I am a gamer (PC and 360 at the moment; currently working on the classing Wing Commander games on an old PC I got going in preparation for Star Citizen in the next year or two as I like space sims), but PS4 probably is the next-gen system I'm most interested in, so I'll keep that in mind should I acquire one. =) Thanks for the invite!

Re a status update (and I'll keep this thread updated; it's therapeutic and might help others with similar symptoms), still twitching, but I think today and yesterday the twitching is a little less, but with a few new places. Not quite as much in the leg (still there; just not as constant), but a new one on my right side near my abdomen, which just feels weird. =oP Still, it seems died down in general, but my joints (especially fingers and wrists, but knees too) feel a little stiff. Full range of movement and strength and all, it just feels a little...different. Still some ghosty sensations and pins and needles occasionally too. Trying to just do what I do and not worry about it too much.

Finally, forgot to mention something in the original post that might be related. Since this all started, I've had soreness in my mouth and tooth sensitivity. It's a bit better than it used to be and I've been to the dentist since (and he didn't see anything wrong). But that's pretty new for me. Could be related; could be not. (Could also be related to the joint stiffness feelings, as my hands especially have felt a little odd since about the same time; nothing too uncomfortable, just...not quite usual, which is an apt description for how I feel since this all started - okay but just not quite myself [possibly my new self, in which case I'll adapt]).

Thanks again for all the kind words. =)
sgupta
Interested
Interested
 
Posts: 12
Joined: February 10th, 2014, 3:05 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby ShawnW on February 14th, 2014, 3:51 am

Anxiety does all sorts of things to the body. Once we start worrying about symptoms new ones will appear. Everything you spoke about is common here. Instead of looking for horrific diseases, treat the one you know you have...anxiety and your life will get better. I like anxietycentre for general information...getting a good therapist also helps.
ShawnW
Selfless giver of time
Selfless giver of time
 
Posts: 232
Joined: January 8th, 2014, 7:00 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby sgupta on February 14th, 2014, 7:09 am

Thanks. I am honestly doing better with the anxiety, but I am also strongly considering a therapist to assist me with that. I do think the original twitching and some of the other symptoms are legitimately medical, but the anxiety certainly can't be helping. (And I did have a stressful year, including the death of a family member, so it could be things affected me more than I realized too.) Again, appreciate the kind words. =)
sgupta
Interested
Interested
 
Posts: 12
Joined: February 10th, 2014, 3:05 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby sgupta on February 18th, 2014, 12:52 am

Just as an update, the last few days I've definitely twitched less. In fact, yesterday I don't think I noticed any at all. Today I had a bit of minor twitching, but that's it. Joints still feel a lil stiff/funky/achy, but that could easily be down to the intense cold/dryness in NW PA.

Trying to keep my mind off of it. Had a bit of an obsession yesterday wondering if the arginine I took for cardiovascular health (at its peak a little more than 3G a day) could have caused something serious (MND), but eased my mind a little. It was lower dose than a lot of people take (especially performance enhancing supplements, which can be 6G+), and there's evidence that arginine doesn't actually boost Nitric Oxide that much (more than a few studies using more than I ever took didn't cause any NO increase unless there's an existing deficiency to begin with as the body when working properly knows how much to make), and even then, there's no clear connection that Nitric Oxide is the culprit in MDN, just a potential factor (and I took antioxidants during this time as well). I just sometimes get caught in these loops where I research nonstop even though I know most of the information out there already and just can't seem to accept there's no clear answer and even if there were, it wouldn't change anything. But I get it in my head it's this one thing that might be the culprit, when it could be a myriad of other things (using TENS units, a genetic defect, other supplements I've taken), or nothing at all (most likely I'm fine!).

Anyways, in general I'm doing pretty well as long as I can stay away from Google (for these purposes at least!). This is still not where I want to be as far as anxiety, but I also realize it's a far cry from where I was when I felt like I could do nothing else but worry. I'm more successful at getting it out of my system and enjoying the things I always have, even if sometimes I still waste more time than I want to on these things. But it's getting less and less as I calm down.

Also, positively, it stands to reason the twitching wouldn't abate as much as it has if this was something more serious, unless again it's a really, really, insanely rare presentation.
sgupta
Interested
Interested
 
Posts: 12
Joined: February 10th, 2014, 3:05 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby ShawnW on February 18th, 2014, 6:04 am

If you spend your time researching anxiety, and all the symptoms associated with that...it would be better use of your time. When you research you are looking for reassurance. Yet, you only find things that promote anxiety. Do not research unless it's about anxiety...period. There are methods to deal with anxiety...tools to deal with this...and that is what you have.
ShawnW
Selfless giver of time
Selfless giver of time
 
Posts: 232
Joined: January 8th, 2014, 7:00 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby veryworried123 on February 18th, 2014, 2:18 pm

i agree with the above comments

nothing looks concerning

i struggle from it trust me but senior members will tell you that beating BFS is mental
you need to over-come that. Part of that is being here and gaining advise and part of that is even getting off here as your obviously bright and will realize a lot of articles here are from people that are new-comers taking about the same thing and debating the same thing...this leads to confusion even for me at times

read bfs in a nutshell...is it perfect and 100% probably no but its pretty close

also read good cop bad cop...this will give you a good idea and a lot of the work has been done for you

don't get freaked out by new symptoms...this will happen as your BFS changes

also its not about not caring but stop worrying

you need to break that cycle and its not easy

collect info from here from senior members, then work on your stress levels and anxiety and then get off this site...and once in a while come back here when you need support
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby sgupta on February 18th, 2014, 10:05 pm

Thanks much for the feedback!

Still relatively light on twitches (but I'm aware that may change and trying to prepare for it)!

I think you're right about the anxiety being the main problem, as what I'm anxious about tends to switch without good reason among "topics of the moment". As soon as I'm at peace about one thing (or accepting of it), something else starts. For example, it might be arginine one day, previous use of TENS devices another, and experimenting with synthetic (at the time legal) pot a few years back another. But the fact is, there's no reason to think any of this caused any harm (and clearly none at the time, so no reason to think recent symptoms have anything to do with things done months or years previous), and even if there was reason, I can't change any of it now - I can only learn and live healthier, which I'm doing.

I will continue battling the anxiety, and I'm still considering getting an appointment with a therapist if I can't do it on my own.

Thanks for all the kind words, patience, and reassurance. It is appreciated more than you realize. =)
sgupta
Interested
Interested
 
Posts: 12
Joined: February 10th, 2014, 3:05 am

Re: My BFS (I hope!) Story - comments/support appreciated!

Postby veryworried123 on February 19th, 2014, 12:12 am

i know how much you appropriate it because ive been there and still am
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: My BFS (I hope!) Story - comments/support appreciated!

Sponsor

Sponsor
 

Next

Return to General Topics

Who is online

Users browsing this forum: No registered users and 2 guests