Hello, and thank you!

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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Hello, and thank you!

Postby pdodge715 on July 11th, 2012, 6:52 pm

Hi everyone,

I just registered with the site yesterday, but your posts have been bringing me an incredible amount of comfort and relief for the past 2 weeks...I'm truly grateful for all that you've shared more than I can express.

Here's my story:

As so many of your introductory posts begin, I found my way here after Googling "muscle twitching," reading way too many ALS symptom threads, and freaking out beyond belief...(I tend to be a hypochondriac anyway...even without twitching all over).

I am 26 years old and in pretty decent health overall. 3 months ago, I woke up with a tingling sensation on the ulnar side of my left arm and hand, and also in my lower left leg and foot. After about 20 chiropractic visits addressing the presumed cause of my neck being out of whack, my arm tingling had pretty much disappeared, and the leg symptoms were barely noticeable. No issues after that until about 3 weeks ago, when my right forearm developed a pronounced muscle twitch about 5" long that persisted for a day and a half. In its wake, the area had a dull ache that came and went over the next several days.

A couple of days after that, I went to the gym with my wife for the first time in about 2 months. I ran a couple of miles on a treadmill, did some upper body lifting, and then walked about 3/4 mile on an incline to cool down. An hour later, I'm sitting on the couch and I notice my calf muscles are twitching like crazy. My assumption was that I didn't stretch enough, or my body hadn't been exercised like that in a while, so I put it out of my mind.

The twitching, however, continued and seemed to get worse over the next couple days...spreading up to the lower half of my thighs. This is when my Googling began, and I consequently scheduled an appointment with my GP. I told him my fears of ALS/MS, and he told me he would bet on BFS, but ordered blood work and an EMG to rule out the bad stuff. This was last Friday. I have now received my blood work - all clear, no autoimmune - and the EMG was scheduled for today, but apparently I got the appt time wrong and have had to reschedule for next Wednesday. Meanwhile, my twitching has gotten worse. It's now in the feet, toes, and occasionally the arms...while my legs are still going off like crazy and now have some cramping sensations to boot. A couple of days ago, I had a 24-hour period where the twitching was extremely minimal; but unfortunately it didn't last. However it does seem that my twitching only occurs during periods of rest. If I am twitching during physical activity, I certainly am not aware of it.

I've got anxiety issues anyway - just switched jobs, monetary concerns, etc... and have been on Xanax since about 2 months before the twitching started. So, everything I've heard about stress being a catalyst for twitching episodes certainly lines up. I've done, much like the majority of you, all the ALS strength tests I could find and haven't had any issues. (Except standing on tiptoes on 1 foot for 10 seconds, I always lose my balance on that one...but jumping up stairs on tiptoes, running, and driving are all fine). No weakness that I can sense, no numbness or anything.

To me, my experience sounds so much like all the stories I've read on here (Hopefully you all will agree!)... and that really gives me hope and comfort as I'm going through this difficult time. Assuming / Hoping that my EMG comes back normal and I truly do have BFS, I hope to lend my support to future newbie twitchers as you have all done for me.

Again, thank you all from the bottom of my heart for the hope and comfort your posts have provided for me!!

- Patrick
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Re: Hello, and thank you!

Postby plainslady on July 11th, 2012, 7:35 pm

Patrick,

My money is on a completely clean EMG! Nothing, and I mean NOTHING you have written sounds different than the "typical" BFS beginnings. I too found my way here after letting Dr. Google shave ten years off my lifespan... :shock: The twitches were busy before google, but afterwards they developed a mind of their own and spread all over my body from scalp to toes in a matter of a couple of days. I have also experienced numerous episodes of tingling and soreness in both my arms and legs.

One thing I remember vividly before BFS was after a good workout or even an extended walk, my legs would twitch all over for 1-2 hours every single time. I always figured it was normal, but have yet to talk to anyone outside of a BFSer who experienced them for that long of a time after exercise. Now that BFS is full blown, exercise always brings them to life. In fact, it was hard for me to exercise in the beginning of BFS because of the dramatic uptick in symptoms I would experience for a day or two after.

And like so many of us here, I have suffered with anxiety issues for a long time. In fact, my first panic attack was at the age of 8...and I've never gone any real length of time since then without severe panic attacks and episodes lasting months at a time of generalized anxiety disorder. Anxiety is rocket fuel to the fire of BFS, and it sounds like you've had your share of it lately.

Welcome to the boards! Don't be afraid to ask anything, that's what we're here for!

Frances
“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one”
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Re: Hello, and thank you!

Postby pdodge715 on July 12th, 2012, 9:21 am

Thanks, Frances! It's really encouraging to hear your similar experiences! I was fortunate enough to get my EMG moved up to tomorrow AM - so I will let you know how it goes!!
- Patrick
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Re: Hello, and thank you!

Postby mwagner on July 12th, 2012, 10:17 am

Patrick,

Welcome to the world of BFS. I can guarantee you that your EMG will be just fine. You sound like all of us and fit in perfectly. BFS is a strange thing isn't it? I was trying to figure out what might have caused your onset, and it's just like all of us - maybe stress, maybe your neck issue, etc., but overall it's a big mystery.

One question - are you still on xanax, or are you trying to wean off of it? If you're trying to wean off of it - I believe benzo withdrawals can cause twitching, so if your body is wanting xanax and you're denying it xanax - you may get twitching.

Also, the exercise onset of twitching is totally normal, even in people without BFS. Many people's muscles twitch after workouts. Unlike BFSers - the twitching usually goes away after a period of time.

It's like we have something that triggers it (let's say, for example, a workout, or an illness, or a period of extreme stress) - then we experience stress by googling it and its symptoms - and it goes crazy and the twitching spreads.

Anyway, rest assured your story is like so many of ours.

Mitra

PS: Unrelated: I am just constantly amazed by the intelligence of the people on this board. If you go to any other board out there on the Internet (try the anxiety board for example) - people not only have horrible spelling, grammar, but can't even properly explain what's going on with them. Here, you'll notice that there's very little of that - in fact, people on here can describe things in medical terms that would rival what a doctor would say. Even with the folks that claim English is a second language. Such a strange thing, don't you all think? Maybe higher levels of intelligence = greater anxiety = BFS. Yes, I'm still trying to figure out the freakin' root cause of all of this!!
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Re: Hello, and thank you!

Postby pdodge715 on July 12th, 2012, 10:47 am

Hi Mitra, thanks for your reply and confidence in my prognosis! You picked up on a detail I, too considered as a possible factor:

mwagner wrote:One question - are you still on xanax, or are you trying to wean off of it? If you're trying to wean off of it - I believe benzo withdrawals can cause twitching, so if your body is wanting xanax and you're denying it xanax - you may get twitching.


I was trying to wean off the xanax a little bit before the twitching... I had pretty much stopped taking it on weekends, and was only taking .25-.5mg/day during the work week. However, since this all started, I'm back up to full recommended dose of .75mg/day, and haven't noticed any relief of my symptoms.

mwagner wrote:PS: Unrelated: I am just constantly amazed by the intelligence of the people on this board. If you go to any other board out there on the Internet (try the anxiety board for example) - people not only have horrible spelling, grammar, but can't even properly explain what's going on with them. Here, you'll notice that there's very little of that - in fact, people on here can describe things in medical terms that would rival what a doctor would say. Even with the folks that claim English is a second language. Such a strange thing, don't you all think? Maybe higher levels of intelligence = greater anxiety = BFS. Yes, I'm still trying to figure out the freakin' root cause of all of this!!


I have noticed a definite pattern of intelligence in this forum! Perhaps there is some truth to intellect breeding stress!
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Re: Hello, and thank you!

Postby mwagner on July 12th, 2012, 11:14 am

Patrick,

Just a quick thought - I have a feeling that something can "trigger" BFS, but trying to reverse it is usually unsuccessful.

For example, you'll see many people on here who found they had Vitamin D deficiencies or Vitamin B12 deficiencies. When they increased their intake of these vitamins, the twitching doesn't usually improve (maybe a little for some). Or for the folks who might have thyroid issues - taking thyroid medication doesn't seem to improve their twitching.

It's like once the damage is done and twitching starts, it's there to stay. Very few people on this forum have had their twitching completely go away. Many have seen substantial improvement (in my case, mine definitely waxes and wanes), but I haven't seen many people who have had it stop completely (I hope this doesn't sound too discouraging).

That being said - many people leave this forum. Maybe the ones who stay on, are the ones who still twitch, whereas the ones who leave, are the ones who twitch no more! I'd like to think that at least.

Mitra
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Re: Hello, and thank you!

Postby chicagobfs on July 13th, 2012, 11:15 am

mwagner wrote:

PS: Unrelated: I am just constantly amazed by the intelligence of the people on this board. If you go to any other board out there on the Internet (try the anxiety board for example) - people not only have horrible spelling, grammar, but can't even properly explain what's going on with them. Here, you'll notice that there's very little of that - in fact, people on here can describe things in medical terms that would rival what a doctor would say. Even with the folks that claim English is a second language. Such a strange thing, don't you all think? Maybe higher levels of intelligence = greater anxiety = BFS. Yes, I'm still trying to figure out the freakin' root cause of all of this!!


Mitra I'm afraid that this knowledge can unfortunately sometimes bring more harm then benefit ( at least for some)s. People on this forum seem to know a lot as you said, they read and read and read! But then do they actually feel safer knowing what they know? Or maybe that's where their anxiety is feeded ? Reading about all these diseases, syndrome etc... I personally never visited any site about AlS and I admit that sometimes people use here wording that I don't understand...

For my excuse , English is my second language:)

Stay healthy!

Sew
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Re: Hello, and thank you!

Postby Yuliasir on July 14th, 2012, 1:22 am

Hi, for me English is also second language, but it is my profession anyway so that's why maybe it is not so bad :))) I also have to read a lot due to profession (and I am a binge reader since childhood, so... It might be a case!).
Patrick, I can tell you that antistress drugs (except maybe those based on natural ingredients) in combiation with stress might provoke twitches. At least that was my own experience. I had significant stress, and I told to my phychiatrist (because speaking therapist said here his ability is limited) about any solution, and I started with rexetine - and my twitches become widespread from eye to the whole body, and become 24 hours a day! But rexie still did a good job for me giving me good sleep at night and after the minimum treatment period expired and I discontinue it, in 2 month my twitches gradually decreased to almost zero. I have now only circulatory and sensory symptomes (pins and needles, pains etc.) and those related to GERD (swallowing issues/throat issues) sometimes... Do not worry too much and wellcome on board!
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Re: Hello, and thank you!

Postby pdodge715 on August 4th, 2012, 11:35 am

Hi all -

I had typed a lengthy update after my EMG (both calves/feet) on 7/13, but just realized that my connection must have timed out as it never posted! So, here is my second attempt for anyone who read my initial post and is perhaps curious how things turned out.

First of all, the neuro who performed my EMG had perhaps the WORST bedside manor of any doctor I've ever encountered. He did absolutely nothing in the way of reassurance, and approached the subject of ALS with an offensive degree of nonchalance. He even stepped out halfway through the exam to take a 20 minute conference call. Ugh.

At any rate... I explained my symptoms to the guy before the procedure, and instead of telling me it was probably benign, he said: "you're right, these symptoms could be indicative of ALS." :shock: Worst thing I could've possibly heard at that moment. Going through the EMG (which was quite painful for me... especially flexing my muscles around the needle), he said he was detecting my fascics, but that fascics alone are not of neurological significance. He said that when looking for ALS, it is not about the fascics, but rather "the company they keep," in reference to the host of other symptoms that are hallmark of the disease. (When you hear hoofbeats, think horses not zebras). Very much to my relief, my fascics were a party of one that day :D . The last portion of my exam was testing the speed and quality of reactions in my feet to electrical stimulation. He said this was the only slightly abnormal result in my exam: while the quality/intensity of my reactions was better than normal, the reaction time was slower. The Dr. said this could be a possible indicator of neuropathy, but because my feet are chronically ice cold (always have been, GP writes it off to poor circulation due to my height of 6'5"), he can confidently attribute this finding to that. In fact, he actually used thermal strips to take the surface temperature of my feet at the time of the exam, and both feet were too cold to register!

His ultimate ruling is that, at this time, I do not have any indications of ALS or anything beyond a benign condition. However, he did state that because my symptoms were so new at the time of the exam, there is a possibility that I am in the early stages of ALS and it has simply not yet progressed ebnough to be detected on an EMG. Consequrently, he wanted me to be on the lookout for signs of muscle weakness over the next 2 months. If, at the conclusion of that time period, I have not observed any muscle weakness, I can pretty much conclude that I have BFS and nothing more. He also made mention of perhaps doing another EMG in the future just to make sure that nothing had changed. (This confused me a little, as I have previously been told that once you have an EMG, there is little point in taking another one).

I demanded that he give me a specific test to perform to rule out muscle weakness, as my hypochondria would make me experience all types of muscle weakness if given such a blanket instruction. The test he told me to do is to walk across the room on my tiptoes, and then walk back across on my heels. Now, 3 weeks later, I can still perform this test every day, and have even resumed working out (running about 6-8 miles a week and concentrating on upper body lifting). My twitching persists - some days are better than others - and I haven't really noticed any change in condition... so I'm hoping that is indicative of an all-clear! The official 2-month mark will be September 13.

The one new thing I have noticed is that a vein on the back of my right knee became a very noticeably darker shade of blue about a week ago. 2 days ago, a nearby section of the same vein began to bulge out of the skin. All this is accompanied by sharp pain around the vein that comes and goes and seems to only present itself while doing some sort of physical activity. Nothing that I've ever read connects fascics to varicose veins in anyway, so I'm thinking it is probably an unrelated issue...But the timing is certainly coincidental. Will ask my GP about it next week just to be sure...

This is much longer than I intended...my apologies. All-in-all, I was not really put at ease by the neuro himself, but the EMG results were certainly comforting! Thanks to you all for your support!

- Patrick
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Re: Hello, and thank you!

Postby wjjw on August 4th, 2012, 3:03 pm

A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Hello, and thank you!

Postby Benita on August 26th, 2012, 6:03 pm

Hello everyone,

I also need to say thank you to all people on this forum, that helped me in my terrible months of bfs onset. After half a year of conctant random twitching and numbness on times, I am doing fine. Though my general practitones told me she's 100% sure I have ms, although I've had twoo MRIs, six neuro checks in different neurologists, have visited first aid because of not feeling my leg after three months of constant fear and anxiety, blurry vision with normal eye tests, I was worrying about my ability to control the urine and so on. You can't even imagine what your body can do after you've been told you have incurable disease... My doctor- after I came there for the first time- said- "you have ms, it's so common in young people, but don't worry, not all of them finish on wheelchair". Then she sent me on MRI. And didn't believe the normal result. I was totally crashed and my nerves went crazy because the sypthoms didn't stop. Then I've had the 6th visit at neurologist, and a young doctor told me, it's my imagination and I need a psychiatrist. So I went there. Got antidepressants- but it didn't help. Even the psychiatrist suspected Ms. I've made also EMG test, it was normal. You can't even imagine how terrible my life was those months... And if I wouldn't have this forum, I'm sure I couldn't handle it by now. Now, after 6 months of constant twiching, I feel like being born again. I have no muscle weakness at all, as I've been said, I'll be on a wheelchair by now, because I have thw worst sort of ms that rapidly proceeds. I look at my muscle twitch, I see the moves but I feel fine, pshyically and psychically. I don't visit any doctors anymore. I don't take antidepressants, I've never been depressed actually, so it has no point.
Thanks to this forum, I have hope into the future, to be fine after 10 years because the cause probably really is a benigng thing, just doctors haven't got enoguh knowledge about the condition yet. Thank you God to give me this luck and thank you good people here, keep on doing well! Benita
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Re: Hello, and thank you!

Postby Yuliasir on August 26th, 2012, 11:56 pm

HI Benita, so good to see you are OK after that hell happened to you!
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Re: Hello, and thank you!

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